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.”