Show me the Evidence

It’s been a grueling couple of weeks with two court cases to prepare for regarding issues that stemmed from being an advocate.  When I first began being public with advocacy I never knew how political or nasty some of the situations could get.  From my perspective and those I work closely with or those who know me and my son, it all seems so common sense.  Well, that’s not the case and it leads to so much frustration, misunderstanding and worse – harassment and libel.

I represented myself in court as the petitioner, the respondent hired a lawyer and of course that did put me at a disadvantage but I believed that the truth would prevail and if the Judge read the law correctly, it would be clear that I had been the victim of harassment.  In actuality, I am also the victim of libel and slander and the judge did mention several times that I should hire a lawyer and file a case for libel/slander.  At this point I am not going to follow the judges recommendations since I was granted the anti-harassment protection order and if the respondent is not able to adhere to this order there will be criminal charges filed.  My hope is that the respondent will stop the behavior that caused this situation and move on.

What is really strange is that we really do agree on many things but this person would never know that because from the very first interaction with me they had false and preconceived impression of who I am and what I believe in.  The fact that the only in-person conversation I had with this person, they started out by saying “you’re abusive” and quickly escalated to them swearing at me and storming away.  (At that time the person was a Co-Chair of a City of Seattle Commission and a public representative for Seattle)

As with every experience that I have, I learn a lot, I make mistakes and I learn from those mistakes too.

There were a couple of funny things –

I provided a letter that the respondent had written to my employer  (I work as a RN and the respondent has never been a patient of mine nor do I have any interaction with them in the healthcare arena).  The letter was filled with fabrications twisting shreds of truth into fantasy events and outright libel.  The respondent’s lawyer agreed to submission of the letter and stated “and we not only submit it but we ENDORSE it”

Later, the lawyer referred to that very same document as “hearsay”  The judge did call her out on that saying “the respondent wrote this letter – you endorsed it, it’s not hearsay”

The Judge sent the respondent’s lawyer and me into a meeting room in hopes of coming to an agreement so that the protection order would not have to be filed.   The lawyer was clearly irritated with me from the very beginning with an attitude of superiority and smugness – I did not agree to the offer they put before me and in trying to explain why to the lawyer, she threw her hands up and stormed out of the room and said “well I’ll just tell the judge you can’t agree to anything”  OKAY –

Back to the courtroom – as it turns out their offer was for me to basically stop advocating for my son and others, have no contact with The Arc of King County or attend any of their events (this is where the respondent works) – Of course I would refuse – this would make it virtually impossible to continue to advocate for those I work with.  I’m already banished from the Parent to Parent support groups moderated by The Arc of King County due to issues caused by me calling out behaviors of the respondent. The judge did agree and stated that he would never sign an agreement that would take away the right of free speech.

So with that – we went to a real hearing and I prevailed and left the court with my anti-harassment protection order signed and in place.  Perseverance can pay off but I’m ready to be done with this and move on to much more positive work in family advocacy.  We have a long way to go.

A couple more sidebars to this case:

  1. The Respondent provided declarations from at least 4 people they have worked with in regards to advocacy.   None of these declarations dealt with the issue before the judge but all expressed what a terrific person the respondent was and how devoted they are to the cause (This was never a contested issue – in fact, I agreed with much of what the people who wrote declarations wrote.)  The fact remains though that just because a person works hard and gets along with those who totally agree or cater to them, does not mean that the person does not harass others – that is what the case was about so these declarations were totally useless with regards to the facts of the case before the judge.
  2. When the judge stated that he was going to sign the order, the respondent’s lawyer stood up and requested that the judge sign an order of protection for the respondent also.   The judge said “No, it doesn’t work that way”  The respondent filed a petition last year, it was denied, this order is due to the escalation of harassment the respondent has caused since their order was denied”
  3. One of the declarations was written by a person I have never met  (Brian Dahl) I know the name and apparently he was at some Self Advocates In Leadership meeting that I took my son to.  This is what he wrote about my “behavior” at the meeting:

“She, with her son, attended a monthly meeting of this group about a year ago.  I was also in attendance.  Her presence was slightly disrupting but not enough to stop the meeting.  She did nothing to engage in a productive dialogue when she was there and she left early”

Interesting viewpoint of my actions there – what this person does not know is that I was working extremely hard to keep my son from being extremely disrupting to the meeting.  I was not there for me to participate but for my son to try to participate.  We left early because my son was getting more and more agitated and I was trying to avoid a fiasco from happening.    I really wish we could have stayed because after we left there was an issue that my son does have an opinion on and he was not able to stay to address that issue.

I find it extremely telling of this response from Brian Dahl that there is so little understanding of working with those who need extensive supports – both physically and behaviorally to participate in community events.  Mr. Dahl, if you have suggestions on how to include those with disruptive behavior, please contact me and let me know your thoughts.  Right now I see your comment only reinforcing what I and many others have experienced – that many in the self-advocacy and advocacy movement have very little understanding or awareness of what those  with  extremely high support needs choices and desires are because they are excluded from venues that address issues that directly affect their lives.

When they are excluded how do you reconcile the saying “Nothing about us without us?”

 

DRW raising funds – please give details

I received an email today from David Carlson by way of Disability Rights Washington.

The letter comes on the heels of another report they just published regarding the issues at Rainier School – a state-operated residential habilitation center (RHC).

 

Rainier School Walkway

 

Stand with DRW. Let’s work together to stop abuse. Make a donation today.Washington must invest in smarter and safer supports for people with disabilities.

DRW fund raising for abuse

 

It is a well-known fact that DRW is against any type of congregate care – regardless if it’s a person’s choice or not and personally I would question what the real motive is behind this fundraising campaign.  What are the goals and for what purpose?  The plea is quite vague.

Is this a general donation to DRW or are the funds going to be earmarked for more community supports, training and caregiving staff to provide more appropriate care to those at Rainier?

I have asked these questions to DRW but I have not received an answer.  Since they block me from participating on their social media pages I have little hope of the question actually being heard and less of it being answered.  Maybe someone else would have better luck.

Please let me know if you find out any information on this fundraising campaign.

Shaun Bickley – “Breaking” Barriers

I was not at this meeting but I do believe there was chaos present given what I have witnessed and experienced at past meetings.
So many questions and concerns about Bickley – reading how he is disturbed by others who may not show behavior of respect and professionalism, I clearly remember the first in-person interaction I had with him.  Bickley, himself needs some lessons in being a professional and a public servant – volunteer or not, disabled or not.
Public Facebook Post this evening –

This is the email I sent Evan Philip in the Mayor’s Office, CM Lisa Herbold and her staffmember Shannon Perez-Darby, and Interim Director of OCR Mariko Lockhart.

I’m at my wit’s end with the city standing behind misogynists and white supremacists but bristling at the slightest criticism of their policies. Despite the work we have been able to accomplish, several of us are ready to quit after today if the city can’t deal with these issues and provide competent staff support.

*****

To all concerned,

I want to continue to express my disbelief at the city’s unwillingness to provide support to the Disability Commission, and its ongoing support of white supremacist, misogynist, and ableist behavior.

I don’t know how many Commissioners have to come forward and complain about misogyny and white supremacy from Mayoral and Council-appointments before the city takes it seriously. Apparently six isn’t enough. Ten? Fifteen?

Today I witnessed ChrisTiana ObeySumner co-chair by themselves while two older white men screamed at them, interrupted, and corrected them. At one point Eric Scheir began screaming at the top of his lungs at ChrisTiana, threatening to sue. People left the room,. Mr. Scheir is perfectly aware of his ability to physically intimidate women and non-binary people by screaming at the top of his lungs, and if he isn’t, he is unqualified to serve on the Commission. I can tell you he would be fired from any job I have ever had for that kind of behavior.

Jayson Morris is a Council-appointed Commissioner. Six Commissioners have complained about his behavior, the Co-Chair and the Director of OCR had a meeting with him to address his behavior, and the Co-Chairs wrote Councilmember Herbold about him on June 8. Nothing has happened. Eric Scheir is a Mayoral appointment who has exhibited this kind of narcissistic, racist, and misogynistic behavior since before he was appointed. Nothing has happened.

At what point do I assume that individuals acting as agents of white supremacy and misogyny, on behalf of the Mayor and City Council, are simply carrying out the will of those entities? Especially since Meg Bartosovsky and I were removed without even being spoken to because of our advocacy on the Commission. There is a pattern here, and it’s that white supremacists and eugenicists are given every chance and every opportunity to thrive, but developmentally disabled advocates who question the city are removed post haste.

Six Commissioners signed a letter asking for Marta Idowu to be replaced in her position as Commission liaison. Today, while this screaming rant happened, Marta did nothing. What “support” is OCR providing if they don’t address violence within the meetings, don’t keep order, don’t address micro and macroaggressions, and can’t even keep accurate minutes?

My peers voted to appoint me into a Commission-based seat and for me to continue on as co-Chair. I would love to continue the great work we have done, work the City has praised and been credited for, but I sat in that meeting feeling physically unsafe as a man screamed his lungs out at us with the full backing of the Mayor and City Council, and I’ve seen the disparate treatment we receive when we bring light to these issues.

I don’t know how many time I can ask that someone–the Mayor’s Office, OCR, the City Council–take responsibility for the situation it has created: to deal with violent Commissioners and to provide competent staff support to our meetings.

Thanks for listening,
Shaun Bickley
Co-Chair, Seattle Commission for People with Disabilities

Shaun Bickley For the record, it’s been 3 weeks and I still haven’t been given a reason why I wasn’t reappointed (and Meg Bartosovsky STILL hasn’t been told even as little as I have–they removed her without a word). I don’t expect this administration to reappoint me at this point, but I do expect them to be professional about it and to stop supporting racist, misogynistic, and ableist behavior.

 

Transcript of conversation between Cheryl Felak, disabled community advocate and Shaun Bickley, Co-Chair of the Seattle Commission for People with Disabilities

May 17, 2018

This “discussion” took place at Seattle City Hall at a public meeting

Cheryl Felak statements     Shaun Bickley statements

I’m banned because you don’t agree with my opinion, my questions have not been answered I’ve just been told I’m a liar, 

  • You’re abusive

Huh

  • You’re abusive – you’re banned because you’re abusive

I’m abusive?  So what has been abusive about what I’ve said?

  • Calling people low functioning

I did not do that

  • Harassing people okay – I don’t really– I don’t really like – what is your point? Why are you here?

My point is that I would like to have some information shared with some facts

  • And I have told you repeatedly and you’ve said it’s a lie – you’ve been answered – you did a public disclosure request you already have the information that you asked for – did you pay for it- did you pick it up

Yes I have and I’d like to

  • Ok great –

 Tell you there’s information

  • Can you please not get in my face because you’re way too close to my personal space

Okay I’ll stand back

  • Thank you

I’d like to tell you that there was information and facts that were not shared with the commission and with others about jobs and yes, I understand supported employment – do you understand about transportation, what it costs, training, job development, job skill development was any of that

  • Yes – what’s your point

My point is – was that addressed by this commission

  • (Exasperated exhale and long pause) – uh we have two legal certificates – you understand the Northwest Center wasn’t – right

I understand that – I’m not talking about the Northwest Center – I’m talking about the special certificates

  • Right

Were the issues of job skill development, job coaches?

  • Yes

That was all discussed in this commission in relation to elimination

  • So let me

Let me finish my sentence – in relation to elimination of those certificates – was that discussed and how that was going to be taken into consideration

  • It’s not a factor because they consented and they agreed to keep those people at their level. We had two people – this isn’t like Texas where there were 121 certificates – we had 2

You haven’t answered my question yet

  • YES WE DISCUSSED IT AND WE DISCUSSED THAT THERE WEREN’T ANY BARRIERS WE WERE READY TO GO and so listen I really need you to understand, now listen I need you to understand, now listen

Now you back up

  • No

You’re in my space

  • I’m not in your space

City of Seattle Liaison “Shaun back up”

Back up

  • Ok we’re done – Good-bye

Ok – thank you

  • You’re abusive – I don’t need to speak to you, I’m a volunteer,

I’m a volunteer

  • FUCK YOU – GO FUCK YOURSELF – I DON’T WANT TO TALK TO YO

Bickley fabricates stories which border on delusional thought patterns.  

The list of the “great work” includes

  • Spearheading violations of the First Amendment by the Seattle Commission for People with Disabilities

 

  • Spearheading the rule change and legislation to eliminate special certificates – essentially making it impossible for people with disabilities to have any sort of integrated/independent job within Seattle. 

 

  • While being non-binary and dogmatic in using pronouns of they/them (by the way, non-binary is not a disability) Bickley, is unyielding in his binary labels of disabled vs “the abled” 

 

  • Bickley and the whole Seattle Disability Commission should be gutted and started with a fresh set of people who do not have the extreme biases, hate speech and abuse the current commission roster chooses to utilize.  

 

Let’s get some people who know how to collaborate and work together and really break barriers-

Not this renegade group of activists. 

Missing – Common Sense

This is been a year long battle with The Seattle Commission for People with Disabilities regarding their rapid elimination of special certificates that can allow specific people with specific disabilities to work at a specific job for a wage that may be less than the minimum wage.  While they are calling these certificates “discrimination”, the certificates  can actually provide people with an alternative for community integration that they may not have now.
This Commission and those organizations that have signed onto this thought process believing that just raising the wages will enhance these people’s lives have forgotten to ask the affected people themselves.  Some very important information regarding critical issues that people with disabilities who have significant support needs and how those needs are going to be accommodated have not been addressed.
This is the fallout of making laws without collaboration and without addressing the concerns of those who are directly involved.  The Commission refused to address a variety of concerns from stakeholders saying that those concerns didn’t matter and had nothing to do with the certificates or elimination of sub-minimum wage.
The facts are very different – there were 8 employees in Seattle who were making a sub-minimum wage  –   6 were at Ballard Locks making between $9.00 and $10.50 an hour and 2 other employees at community sites who earned  $11.01 and $11.25 an hour.  (The Commission reported extremely inaccurate information via a press release stating that there were “at least 130 disabled workers in the city of Seattle making subminimum wage, most making under $1.60/hr.  The lowest-paid worker under these exemptions in Seattle makes 20 cents an hour”   SCPWD Press Release June 22 2017
The totally false information The Commission released to the press (and previously to the former Mayor and Councilmember Herbold) was discovered as a mistake by the then co-chair of The Commission.  This error was pointed out to the person of contact on the Press Release who refused to issue a correction.  The author stated – press release already went out, if we receive follow up we can discuss that with those people.  He also stated that he would believe the documents he got from Department of Labor over what someone told him.  Unfortunately, this person was not able to read the document from DOL correctly and made this huge mistake in numbers of employees and their wages.  Commission will not amend press release
This is how the Commission responds to those who questioned their numbers:
April 13 2018 second chance from Commission - spam and deliberately false information
Before this issue goes any further under such faulty research and data collection, stop and listen to those whose lives were and will be directly affected by these changes.
I continue to ask the Commission about accountability and transparency – they feel threatened and harassed by me and want to have me banned from Commission meetings.
Maybe the Commissioners should actually read some of the comments I have shared and read the research and documents they presented regarding recommendations.  While doing that, they should research what has happened in those other states who have changed their laws – are the people working, have their lives improved?  These are all issues that need to be addressed before more action is taken.

Email from Shaun Bickley regarding City Council – do not share

The Seattle Disability Commission is proud to be among the first organizations to call for an end to Washington’s exemption to minimum wage laws, which allow employers to pay disabled people, and only disabled people, less than minimum wage.

A current copy of the letter can be found here: https://docs.google.com/…/1cCT_IL6I3HLcmYKdK5QhdNamqQ…/edit…

If your business or organization (operating in the state of Washington) would like to be added, please email sbickley@arcofkingcounty.org . Text is below:

We, the undersigned organizations, oppose the practice of paying workers with disabilities subminimum wage. On April 13, 2018, Seattle joined the states of Alaska, New Hampshire, Vermont and Maryland, in ending the outdated practice of allowing subminimum wage employment of people based on their disabilities. We do not believe workers should be discriminated against on the basis of disability and join the growing coalition advocating for an end to state laws that allow such discrimination.

We believe all workers should be fairly compensated and are entitled to the same minimum wage protections regardless of their disability status. We hope the State of Washington will join other states and cities in taking the lead to put an end to this unfair employment practice.

Sincerely,

Able Opportunities, Inc.
Allies in Advocacy
The Arc of King County
The Arc of Snohomish County
ASUW Student Disability Commission
AtWork!
Autistic Self Advocacy Network
Autistic Women & Nonbinary Network
Community Employment Alliance
Disability Rights Washington
Downtown Emergency Service Center (DESC)
Geeks Without Bounds
Morningside
National Federation of the Blind of Washington
Open Doors for Multicultural Families
People First of Snohomish County
People First of Washington
Seattle Commission for People with Disabilities
Seattle LGBTQ Commission
Self Advocates in Leadership (SAIL)
Sherwood Community Services
TASH
Washington ADAPT
Washington CAN
Washington Low Income Housing Alliance
Working Washington
Work Opportunities

DD Ombudsman – Washington State

I have had contact with the new Office of the Developmental Disabilities Ombudsman in Washington State.  This is a critical organization for those with intellectual and developmental disabilities to be aware of regarding any concerns pertaining to their care and services received.  It is especially important for those who live in the State Operated Intermediate Care Facilities (ICFs) since these residents have no other objective advocate to review their concerns or complaints.

DD Ombuds logo

With that being said, I do have some reservations about reporting concerns to the DD Ombudsman.  The Protection & Advocacy Agency (Disability Rights Washington) which has been very vocal with their agenda of closing the ICFs, is the independent non-profit agency that was awarded the contract to administer the DD Ombudsman Program.  The Region 3 Ombudsman (Noah Sidel) was the previous Self-Advocacy Coordinator with The Arc of Washington working with Self Advocates in Leadership (SAIL) and has testified many times to legislative committees with the position that the ICFs need to be closed.

Given the history, it is very difficult to trust that the above biased agendas will not be pushed forward by the DD Ombuds office if concerns of those residing in the ICFs are reported.  I know that ICF residents and families have been reluctant to make any complaints regarding concerns out of fear their complaints will be used as “proof” that the ICF needs to be closed.   The history is that rather than looking at the problem and fixing it, the problem is used as a reason to close the ICF.

The problem is that when residents of state operated facilities make allegations the investigations are done by non-objective, state employees.  Many times these investigators are not healthcare providers and are not able to assess if the care provided met the community standard of care (medical and nursing care to be specific).  Once the Residential Care Services (under the Department of Health and Human Services) the facility administration or the State Investigative Unit have “investigated” and made their report, there is no ability to appeal or have an outside, non-DSHS employee review the allegations.

If state law were followed with regards to medical and nursing care of these residents, the oversight of the care would be provided by the Department of Health.  The management of nursing care and practice would be done by Registered Nurses – not non-nurse administrators.  Complaints regarding nursing or medical care would be reviewed by healthcare professionals not investigators who are not licensed healthcare providers.

These are systemic problems that need to be addressed.  My hope is that by bringing these critical problems to the attention of the DD Ombudsman, appropriate legislation will be written which will bring the oversight of the healthcare of residents in the ICF in compliance with the Washington State Law.

Below are some letters that describe the allegations and specific State Laws which were allegedly violated.  My intention regarding this information is so that these systemic problems are identified and corrected.  I support a full continuum of care and the ICF is a critical part of that continuum.  This information is not to be used in the agenda of closure but to address the issue of quality care and appropriate oversight of healthcare.
document for DD Ombuds

letter to Mr. Hakim regarding systemic issues of healthcare neglect at Fircrest

Letter to Senator Keiser regarding issues at Fircrest and DD Ombudsman 2017

Systemic Errors in Medication Administration at Fircrest

ODDO-Advisory-Committee-Meeting-Minutes-9.16.17

DD-Ombuds-Annual-Report-2017-Final

DD Stakeholder Survey for DD Ombudsman

Too Little, Too Late

In continuing to  address the issues of reported healthcare neglect  in the intermediate care facility for those with intellectual disabilities and how investigations are handled within the Department of Social and Health Services, I have had very similar observations of a flawed system that is reported by experts in the report Too Little Too Late:  A Call to End Tolerance of Abuse and Neglect.

too-little-too-late-title

The above report does not address complaints and investigations of allegations from those living in the institutions but the observations reported by the expert consultants are concerns that I have expressed regarding lack of accountability in the system which is supposedly there to protect our most vulnerable.  I realize it is not my imagination but reality that the system is broken.

“My review of the Washington DSHS Quality Assurance system, specifically mortality review, found a flawed system that does not “meet and maintain high quality standards” and is not an effective safeguard to protect health and welfare. Within the 6 months studied-June 1- December 31, 2012- there was a number of preventable waiver participant deaths. In addition to the concerns I have about these avoidable deaths, the poor quality of care for other participants, whose death although expected, causes me great concern about the quality of health care coordination and provider ability to meet the health and welfare needs of Washington waiver participants.”

Sue A. Gant, Ph.D. Date:  August 6, 2012

 

“Another unusual feature of the RCS investigation summaries is that they often did not reference findings pertinent to the allegations of abuse, neglect, mistreatment, and exploitation referenced in the initial complaint(s). In other cases, investigation summaries would reference these allegations and findings regarding their merit, but then conclude that the no provider practice deficiency was identified.”

“Many of the problems could be traced back to the tardiness of the investigations, but others (as also noted in my initial report) reflected the investigators’ failure to address significant issues, including allegations of abuse and neglect. In addition, as noted in my initial report, these investigations continued to manifest a trend of very “conservative” determinations of no citations for “failed provider practice,” even in instances when investigation documents explicitly referenced failed practices.

In addition, DSHS’ routine “planned ignoring” of allegations of employee abuse and neglect in its investigations is wholly non-compliant with basic expectations of the Centers for Medicare and Medicaid, as well as its own Quality Management Strategy”

Nancy K. Ray, Ed.D. President NKR & Associates, Inc

As a nurse who has worked in a Joint Commission Accredited Healthcare Institution  for over 30 years, I understand the purpose of nursing policies and protocols.  They are not just a useless exercise – they are there for a reason – TO ENSURE PATIENT SAFETY – and they accomplish this through various routes.

he prerequisite training credentials of their investigators, are not addressed at all by DSHS’ policies. Other procedures prescribed by the policies are routinely not complied with, either because resources to ensure their implementation are not available or supervisory oversight by DSHS is so lax that noncompliance by investigators and their supervisors has become commonplace.

When an investigation is returned “Allegations unfounded” together with the nursing policy that was clearly violated in many areas, questions of integrity, accountability, knowledge of the subject matter, and many other questions arise.  There is certainly not “closure” to the problem as the agency sweeps it under the carpet with the rest of the ignored problems they wish away.

Resident health and safety is at risk and will continue to be so until some of these problems are addressed and a plan of correction put in place and evaluated for success.

Abuse and Neglect Response Improvement Report – October 2013

subcommittee-response

 

There is a solution to the problems that I am referring to.  Ensure The Department of Health has oversight and licenses the healthcare clinics housed on the campuses of the residential habilitation centers.  DOH is the state agency which specializes in healthcare and should be the agency which provides oversight of healthcare – not the Department of Social and Health Services.

 

Not Just the Next Empty Bed

Recently we moved our son from the intermediate care facility to a home in the community under a supported living arrangement.  It was a difficult decision to make given all the research that I have done regarding care and oversight.  Many people wrote to me telling me of the terrible decision I was making and with horror stories of things that had gone wrong in the community.  I was well aware of many of these issues and still am aware of the lack of choice and quality of care that is offered in many settings.  I am aware of the cost issues and the cost-shifting that occurs making it appear that care in the community setting for those with complex care needs is less than the cost of care in the ICF/ID.

But, there were some circumstances that necessitated this move – a move that we thought we would not be making for a long time – namely that the ICF/ID was not able to provide the prescribed medical and nursing care that my son needed and his health was in danger.  There had been charges of medical/nursing neglect, many medication errors, and other issues related to personal and healthcare concerns.  The ICF/ID healthcare providers refused to follow the prescribed treatments of my son’s medical specialists and I was forbidden to teach nursing or personal care staff how to administer special medications or how to apply his splints correctly.  My hands were tied  due to the inability of the facility to acknowledge problems – not one specific problem but many.  I needed to visit several times a week in order to do his nursing care while at the same time being told that my visits were doing him a disservice.

But, my son had one option in this that most other people do not have – the option of CHOICE.

While on the wait list for the Roads to Community Living grant I was able to try to maintain my son’s health until we were able to choose a home that would work for him.  We had specific criteria – number one being that he needed to remain in our local community, the one in which he grew up and in which the ICF/ID was also in.

Of course, the supported living agency had to choose my son first before he could choose them and that took over a year and probably 8 rejections from local agencies.  When Alpha Supported Living Agency said they could support him, it then took time to hire and train staff and planning for which house would work best for him given the mix of the residents.

One of the major reasons that my son had this choice was due to the fact that he had continued to live in our local community and we involved natural supports to help with his care and community integration. He did not have to take the “next empty bed” as his choice for this move (that was how he got into the ICF/ID to begin with)

We are so thankful for this opportunity and my son’s health has greatly improved since his move and he has blossomed in many other areas too.

It is my assumption that many problems that arise from community residential services is that “the next empty bed” is the only choice available.  This is not a system which supports person-centered choice or real community.

There needs to be changes and more alternatives for true choice – from congregate, campus based care to individual homes – as long as the person is appropriately supported one can have a very meaningful life. Many times this takes much collaboration and team effort and adequate funding to support – but it can be done.

Please check out The Autism Housing Network for and ideas on how to increase choice and alternatives for adults with intellectual disabilities.

Disability Rights Washington has filed a lawsuit against Washington State Department of Social and Health Services and the Washington State Health Care Authority to help speed up transition and provide supports in the community.  My son is a member of this class-action lawsuit although I was not aware of it until it was made public this week.

Letter from DRW to DSHS and HCA

DSHS and HCA response letter

I (and others) have been misled

For several years I was under the impression that the Intermediate Care Facility (ICF/ID) and Residential Habilitation Center (RHC) where my son lived was also a healthcare facility.  We were led to believe that the medical and nursing providers had oversight by the Department of Health which also provided oversight to what was referred to as “the healthcare clinic.”

The ICF/ID and RHCs are NOT healthcare facilities.  There is no professional peer review or oversight by the Department of Health.  I have learned this lesson after years of frustration trying to get appropriate medical and nursing care for my son who was a resident of the RHC.

While these facilities in Washington State employ Physicians, Nurses, Physical, Occupational and Speech Therapists to provide care to the residents, there is no state oversight of this care to ensure it meets the community standard of care that everyone should be entitled to.  The residents and their families/guardians are led to believe that appropriate medical and nursing care is provided but in some cases, I believe this is not happening.

This is a systems problem that no one seems to be able to address.  The Department of Health has no oversight, the Department of Social and Health Services does not look at healthcare standards, the Long Term Care Ombudsman does not oversee anything having to to with the Intermediate Care Facility or RHC, Disability Rights Washington (the Protection and Advocacy Agency) has not addressed this problem.

I fully support the idea of an intermediate care facility and a campus community that can provide full service health and behavioral care but the system in place in our state does not meet this standard.  It is shameful that the agency which oversees the RHC cannot see that there are major problems ensuring the healthcare for the residents is provided for.

It appears to me that our state is not meeting the Federal Regulations  and the so-called “investigations” that have been done have been a waste of time and energy.    This is so frustrating  – when they can not even see the problem, there is no opportunity to fix it.  The whole system is in denial and it is only hurting the very people who are supposed to be helped.

The investigator I spoke with today made it very clear by her repeated statement of “the RHC is not a healthcare facility” and by the regulations she had there were no deficiencies to cite.

I read the Code of Federal Regulations differently though – Below is the exact text from the Code of Federal Regulations  – am I reading this incorrectly?

  • 440.150   Intermediate care facility (ICF/IID) services.

(a) “ICF/IID services” means those items and services furnished in an intermediate care facility for Individuals with Intellectual Disabilities if the following conditions are met:

(1) The facility fully meets the requirements for a State license to provide services that are above the level of room and board;

(2) The primary purpose of the ICF/IID is to furnish health or rehabilitative services to persons with Intellectual Disability or persons with related conditions;

(3) The ICF/IID meets the standards specified in subpart I of part 483 of this chapter.

(4) The beneficiary with Intellectual Disability for whom payment is requested is receiving active treatment, as specified in §483.440 of this chapter.

(5) The ICF/IID has been certified to meet the requirements of subpart C of part 442 of this chapter, as evidenced by a valid agreement between the Medicaid agency and the facility for furnishing ICF/IID services and making payments for these services under the plan

So, my questions are is our state our of compliance by the ICF/ID or RHC not being a healthcare facility?

If so, how is this remedied?

 

 

 

Seattle Times “Opinion”

I want to be hopeful but am afraid that nothing will change.  Even though The Seattle Times published an article by Maureen O’Hagan entitled ” State ignoring abuse at group homes “ and The Seattle Times published the editorial “DSHS must investigate alleged abuse at group homes for the disabled” my hopes of reform fade.  We hear that The Arc – Washington State will be advocating with legislators on this.  The Arc-Washington writes “The basis of the problem lies with DSHS. It takes weeks or months for them to respond to reports of abuse and often nothing happens. The Governor proposes to add funding for more investigators.”

This is just “talk” and will amount to “no action” from The Arc, Disability Rights Washington, Washington State Developmental Disabilities Council and other agencies which receive public funds to advocate for this population.  The history is that they use these funds to discriminate our most vulnerable.   In the name of deinstitutionalization these groups have advocated for community inclusion.  What these groups do not understand is that many of these same people already lived in a community – it may have been a different type of community than what the people who run these organizations may choose to live in,  but it is a community for the people who find it supportive, safe and stable.

The mis-placed and misguided advocacy of these groups is also the basis of this problem.  I know that I am not the only one who has attempted to educate these advocacy groups on the issues of unsafe conditions in these group homes or issues of safety and stability.  These groups have not wanted to hear or acknowledge that there were problems.  They wanted to see that moving people from stable and safe supportive communities to individual homes scattered far from their friends and families to be “included” in community was an experiment that was succeeding. They wanted to see “inclusion” and “integration” work.  I do too – the difference is that I see inclusion as being part of the community – community meaning participating, contributing and belonging.  I believe each person can define what that community is to them and they can make a choice.  The misguided advocates do not allow people to make this choice and have defined “community” to mean something else.  Many times the “community” these misguided advocates force upon people does not lead to “inclusion” but to  ISOLATION and IMPRISONMENT.

This experiment failed – many have been harmed or killed.  It’s time to stop this experiment on unsuspecting people. How many of these people provided “informed consent” to this social experiment?

Where is the advocacy for improved oversight, better staffing levels, better pay for caregivers?  These are critical to improving care, safety and stability for all.  Yes, we need investigations but investigations without action will do nothing except waste more money and cause more harm.

 

 

State Ignoring Abuse in Group Homes

Article today in The Seattle Times highlights some of the issues which we are concerned about:

http://community.seattletimes.nwsource.com/reader_feedback/public/display.php?source_id=2019925424&source_name=mbase

I have written several times on just this issue.  Please see Throwaway People and previous posts regarding similar problems and concerns.

Unfortunately, it is not just our state which is lacking oversight of homes for people with intellectual and developmental disabilities (I/DD) – this is a problem which has gone unchecked for too long.  Too many people have been hurt, abused, killed because of this lack of oversight.  The overzealous efforts to “deinstitutionalize” have created another problem and it is time to look at this problem rather than continue to exacerbate it.  Let’s put the brakes on this disastrous experiment before more vulnerable people are hurt.

 

U.S. Department of Health and Human Services (HHS), Office of Inspector General (OIG) * June 27, 2012 
• Full HHS OIG Report
• Listen to Podcast / Summary of Report

• Read transcript of Podcast
Excerpts from Podcast:
“These [Home and Community-Based Services Waiver[ programs primarily serve the elderly and the disabled – people who are among Medicaid’s most vulnerable populations. And the very nature of the programs puts them at risk of receiving inadequate care. Most programs allow beneficiaries to be cared for by nonprofessionals without medical training.
“And, what’s more, beneficiaries receiving care in their homes are often alone and isolated from observers who might detect abuse or mistreatment. This is very different from the situation in nursing homes, where there are a lot of people who can detect and report potential abuse .
“Well, we went through the data that CMS collected, and we saw that CMS was aware of a lot of significant problems. CMS’s data showed that 7 of the 25 States we reviewed did not have adequate systems in place to ensure the quality of care.”