Appreciating Diversity at Home

Thomas with his map of where staff are from

Thomas had a terrific time on this outing and is really happy with his new map.  One of the reasons he likes it so much is because it’s the same map we had on our wall at home while he and his siblings were all there growing up.

He emailed me many times telling me that he was going to take the bus downtown to Pike Place Market, go out to lunch and the map store with Craig.

About as soon as he got home he sent me the following email:

“Dear mommimahd a great time on the bus with creg today “

I love the emails that Thomas sends me – many times it takes quite a bit of deciphering but it’s really worth it.  Being able to use an iPad has greatly benefited him and provided him with several ways to communicate and interact with his community.

Appreciating Diversity contributed by Craig

I just happened to find this post on the Alpha Supported Living Services Website.  It made me feel really happy to see this written up and shared with others.

VAPO – Vulnerable Adult Protection Order – Part One

This past year was met with several new and “interesting” issues that needed attention.  One such issue was our adult my adult son being stalked by a predator.  As with most situations like this, there is a “honeymoon” phase of grooming before the predator pounces on the victim.

Adult grooming is correspondent to child grooming and applies to any situation where an adult is primed to allow him or herself to be exploited or abused. While it is a common assumption that grooming is only practiced on the very young, identical emotional and psychological processes are commonly used to abuse or exploit adults the elderly, and those with compromised mental facilities.

An predator will identify and engage a victim and work to gain the target’s trust, break down defenses, and manipulate the victim until they get whatever it is they are after. Overt attention, verbal seduction (flattery / ego stroking), recruitment, physical isolation, charm, gift-giving, normalizing, gaslighting, secrecy, and threats are all hallmarks of grooming.

Looking back on what all transpired, we can see how this grooming occurred – given that Kathy also lives with schizophrenia (we did not know this beforehand – not that it would have changed anything except knowing that it is not uncommon for people to stop taking their medications  we would have watched for changes in behavior sooner) Unbeknownst to us at the time too, Kathy has a history of stopping her medications and decompensating quickly – as happened in this situation too.

Kathy is a woman that we have known of for many years (maybe 20 years or so).  She and her family were parishioners at our church when we first met them.  We really didn’t have much personal contact with the family other than saying “hi” when we ran into them on occasions and then it seemed as if the whole family disappeared for several years.  Periodically over the years, Kathy would show up alone at various events but we never saw her consistently.  The most common place would be walking around
Greenlake since members of our family make that a daily habit and maybe Kathy does too.  Then again, the contact would mostly just be a quick greeting as each person continued on their way in opposite directions.

February 2018, we were at a family dinner at church and Kathy was also there and joined us.  It was actually the most that we had talked with her for about 20 years.  We updated each other on our various children and what they were all up to.  Thomas, our son with IDD was with my husband and me.  Thomas is extremely engaging and interested in people.  He tends to draw people to him with his constant questions and interest.

Kathy picked up on this and realized that she and Thomas had some common interests – Catholic Church, going to Mass, music (especially “classic rock” music) and driving around Seattle looking at sites and listening to music in the car.  Kathy approached us to see if it would be okay for her to visit Thomas and take him the eucharist (communion) at his home.  We thought it would be a great idea and Thomas would love it.  It would increase his “natural supports” which is typically a good thing.  There would be Thomas’ support staff there if any issues came up.  This took a couple of months for everything to be arranged and “instructions” gone over and all was good!

The first visits were a success and Thomas really enjoyed meeting with Kathy and sending her emails.  We were glad that he had a new friend and someone to share interests with.  After about 4 visits, Kathy asked about taking Thomas out and to a mass at church.  This opened up a whole new area and anxiety but we reviewed specifics about safety and behaviours, specific instructions regarding issues in the community and knowing that it would be our church they would be going to, we agreed.

Kathy followed all the instructions and she and Thomas had a great time – out for dinner, picnic in the park, mass and then driving around listening to music.  We were all feeling good about this and that it had been successful.

Unfortunately, that did not last long – within a week things got very, very crazy – something that I would never had suspected.  Kathy then began to want to see Thomas every day, take him out to mass even when he had already gone to mass,  began writing very odd messages to him and other odd behaviours.

There were plans to take him out again and she did not follow the instructions and this caused an extreme crisis in Thomas’ life.  I was informed by his staff that evening and quickly followed up with Kathy that I needed to meet with her to discuss the issues and again wrote out issues of concern and “instructions” that anyone working with Thomas needed to follow hoping that she would see that I was not singling her out but that these were “rules” that we all followed to keep Thomas safe.

I was totally unprepared for the response I received from her –

“Let’s discuss Thomas living with me for a trial. I need to discuss with my other son yet I think we could make it work for a trial or 2. He’s very calm with me and I understand his disorders very well.”

Luckily, she had gone out of town for that weekend and I knew I had a little time to compose a message which was very short and to the point –

Because of the enormous disruption triggered by your extremely late arrival with no communication on Thursday (May 3, 2018) we have decided to stop all visits between you and Thomas. Under no circumstances are you to visit or communicate with him

Her response – “For Now” and then continued to email Thomas.  Things just got more strange from there.

Kathy returned to Seattle and tried to enter Thomas’ home while I was there.  She was told to leave and staff chased her out and we called the police.  Kathy pointed her finger at me (like she was shooting and said “bang, bang”) as she left the house.  I was totally shaking but trying not to show it because I didn’t want to scare Thomas.

After about 30 minutes I felt it was safe to leave and before I got home (10 minutes away) I received a call that Kathy had returned.  She also texted a message to my husband

“Jim please call me. Tommy is my son as you know and I want him back. I AM God and I want to see him now. I’m very concerned about his welfare. Please help me. I’m sitting outside of his house.”

This message and her actions sent us into crisis mode with police activity and court – we obtained an emergency restraining order (which she violated several times) and lived on pins and needles while also trying to remain calm for Thomas’ sake.

She began to stake out Thomas’ house, drive up and down the street, park in neighbor’s driveway and walk around Thomas’ house trying to see in his window.

Cheryl & James – Bruce and I are preparing legal action to restore custody of our son Tommy. Let us know if you choose to settle peaceably. You may receive more mercy.

We had police presence at our house and at Thomas’ house with extra staff funded through DSHS, alarms and motion sensor lights installed all around his house.

Hi James,

Are you willing to testify at Thomas’s hearing so that I can continue to visit with him? As you know, I am his biological Mother and Bruce Springsteen is his biological Father. We want him back and are aware of the voodoo problem…we can handle any complications.

We need your involvement and want Thomas to be present at the hearing. Let me know where you stand on this. We plan further legal action if I cannot visit with him. He can live with me rather than whatever Cheryl is intent upon. I love Tommy.

to be continued –

Activist or Advocate? Seattle Style.

I have come to realize that when an activist is unable to address questions about issues, the activist digresses to personal attacks that have nothing to do with the issues.  This is a diversionary tactic to distract the public from the truth.  It often works or they wouldn’t use this tactic.   The so-called personal attacks could be totally made up (as most are in this situation) or a major twisting of the objective truth.

Case in point – issues of the sub-minimum wage ban in Seattle.  The Seattle Commission for People with Disabilities instituted this rule change and subsequent legislation without listening to concerns in the community.   It’s difficult to separate the Commission from the current Co-Chair, Shaun Bickley since Bickley self-identifies as the person who got this ban in place.  If people credit the Commission, Bickley becomes upset that his name was not mentioned as the person responsible.  This is why many of the issues I address are written about/to Bickley since he was the person answering for the Commission.  This is not a personal issue about Bickley himself, but Bickley, acting as Co-Chair of the Commission and as a public servant for the City of Seattle.

As far as I’m concerned, any one of the Commissioners could answer but they have left it to Bickley to do the talking.  So, my calling out Bickley is only because Bickley is the one doing the communicating for the Commission.

But, Bickley, has made it a personal issue against him, when in fact,  it’s not about him at all but the issues.  I have only been trying to get a conversation on the issues.  Bickley writes as if I have been trying to invade his personal life – I know nothing about the person, his life, and have never tried to contact him personally outside of the Commission.  The fact that Bickley seems to think that the Seattle Commission for People with Disabilities is his personal domain (Facebook and meetings) is a problem.

Bickley blocked me from the Commission Facebook page (he does state this himself) and that was a violation of the First Amendment.  Bickley claims that I cried ‘censorship” when he blocked me from contacting him.  The way he writes this it appears that he blocked me from his personal page and I got upset about that.  I have no idea since I have never gone to his personal page and never tried to contact him personally.  He did block me from the Commission page but that is not HIS page – it is a City Commission page and yes, that was a concern.  Bickley does not seem to be able to distinguish between himself and the Commission.

Bickley recently posted a long diatribe for Autism Speaking Day 2018 on his friends, Kassiane Asasumasu’s blog “Radical Neurodivergence Speaking”.  This essay is an exercise in narcissistic victimization delusions.  When I informed Kassiane Asasumasu of the libelous essay, she wrote ” It’s not libel when it’s true. It’s the best sourced item I’ve ever published.”  Maybe Kassiane Asasumasu never checks sources if she believes this nonsense too.  

For documentation and clarification of letters I have sent to The Arc of King County (Bickley’s place of employment which he claims I have visited and contacted many times asking for his removal).  Bickley also claims that I have shown up in person at his job to demand my dismissal, as well as at meetings he attends – including Commission meetings.    Yes, I have attended Commission meetings and one SAIL meeting with my disabled son but have never shown up at his place of employment regarding anything having to do with him.   These are public meetings for disability advocacy.  The Arc of King County is an advocacy agency for people with intellectual/developmental disabilities – something that I have been involved in for over 20 years.

Letter to Ramona Hattendorf, The Arc of King County, regarding the abusive response at a public meeting by Co-Chair Bickley – May 2018

Correspondence with Ramona Hattendorf regarding issues with Seattle Commission and explanation of events which have occured. June 2018

Bickley writes – she “tried to physically prevent me from exiting the Commission room, probably hoping to entrap me into shoving past her to escape so she could claim to be attacked by the big bad autistic.”

This statement is clearly a fabrication.  I left the room with the Office of Civil Rights Liaison, who is also heard on the recording saying “Shaun, back up”, and Bickley was nowhere near me at the time.  He was still in the Boardroom talking with others when Marta and I left the room in conversation.

Letter sent via blind cc to all those who submitted public comments to OLS May 2018 – I assume that the person that Bickley refers to has partner in this comment “She’s contacted many others, advocates and friends, including my partner, to warn them what a terrible person I am.” maybe one of the 70 people on this list.  This was also the only email that I EVER sent to Bickley’s personal email (except for the reply to his “cease & desist” letter)

Correspondence with Ramona Hattendorf, The Arc of King County, regarding the letter by sbickley@thearcofkingcounty.org regarding elimination of sub-minimum wage statewide – October 2018

As a follow up, the false accusations and libelous comments posted and shared on many Social Media sites regarding not only issues with me but with other disability advocates who have questioned him, are acts of aggression and harassment.

Bickley has NO evidence of the accusation he has fabricated and so the tactic is to make personal attacks and take on the abused victim role.  All I can say is that must be a very sad place to be and a sad place to see the world from.   I do hope that someone is able to talk with him and help him to come to grips with reality but given what I have learned about those with this type of personality disorder, it rarely happens unless that person can acknowledge fact.

And, Bickley, if you are reading this, please do provide supporting documentation for your claims because I have not seen the evidence.  Also, please discuss the issues as I have requested over and over again.

“Things I Mean to Know”

I was recently listening to the Podcast “This American Life” and was struck by the very question that I keep asking of advocates with regards to intellectual disabilities.   We are told over and over again that “evidence shows” yet have these advocates really looked at the evidence or are they just taking on faith what they have heard and have believed it?

Questions asked are “how do we know it’s true?”, “what is the proof of it?” “how much have you accepted without evidence?”

“Sometimes there’s a thing that you think you know, even though, right in front of you, staring you in the face, is clear evidence to the contrary.”  There are also the issues of denial  and deceit at play when censorship of opinions and experiences are practiced.

I’m keeping this here as a reminder to myself and others that things may not always be as they seem to be.  We cannot take things for granted and assume.  Just because someone says something and has an air of authority, it does not mean they are right, just, ethical or moral.

 

HCA Training in Washington

75 hour training  There are at least 40 places other than SEIU 775 to obtain DSHS approved 75 hour training to become an HCA in Washington State.  Below is a link to the page on the DSHS website.  There are various options from online modules to all in-class trainings.  You can choose which training program works for you.  Some are offered only in one county, others are throughout the state.

Training Sites  

The site is difficult to find on the DSHS website – one has to go through many pages and clicks to find it.  If you need help, contact me and I will help you.

Below is one example of one of these DSHS approved Training sites.  There are roughly 40 such agencies listed and these alternatives may help to ease our crisis.

Cornerstone Healthcare Training Company

Another issue with HCA is the situation that was written about in Crosscut October 25, 2018.   This article focuses on a different problem but also related to the fact that Washington State has some of the most restrictive requirements to becoming a Home Care Aide.

Would-be home health workers claim bias in state’s qualifying exam

“Washington state is also home to some of the toughest requirements for home care aides, thanks to a 2011 ballot initiative sponsored by the SEIU 775 Northwest. Within 200 days of being hired — or 260 days for those with limited English proficiency — home care aides must pass a background check and the certification exam.”

We need caregivers – we need to find a way to promote the training and passing of the requirements.  What we have is not working.

SEIU 775 spending to Restrict Caregiving

2008  Initiative 1029 –  Washington Long Term Care Initiative

total funds raised 1029

 

funds raised for 1029funds raised against 1029

 

2011 Initiative 1163 – Washington Long Term Care Initiative

total spent on 1163top contributor for 1163top contributor provided against 1163

 

2016 – Initiative 1501 – Washington Increased Penalties for Crimes Against Vulnerable Individuals

total funds spent initiative 1501

All in all, SEIU 775 funded the great majority for each of these three initiatives.  With misleading information in the titles and tag lines, it’s easy to see how voters were fooled.

The real people getting hurt are those who need care and those who want to provide the care.  There are TOO many barriers for the people involved in accessing the supports they need to remain in their communities.

 

total funds for all 3 initiativestotal funds spent against all 3 initiativesfunds spent for the 3 initiatives

 

SEIU 775 removes choice and limits access to care

Caregiving is in Crisis.  This is not news to anyone in need of a caregiver.

One would think that the Department of Social and Health Services and Advocates would be responsive to this crisis.  I have found the opposite to be true.  This past year I was witness to an incredible waste of time, energy and money by the Department  denying an appeal from a caregiver who only wanted to do her job for her disabled employer.

The problems are multi-faceted and intertwined but stem from DSHS giving power to SEIU 775 to control training and access to those interested in becoming a Home Care Aide (HCA) in Washington State.   SEIU 775 has removed choice for individuals.

There is history to the problems:

Initiative 1029 (2008)  –  Washington Long-Term Care Initiative

Initiative 1163 (2011) – Washington Long-Term Care Initiative

Quotes from one of the many articles written regarding I-1163 –

Voters, don’t be fooled. I-1163 represents the wrong priorities. Mandatory caregiver training and criminal background checks are already required by law. I-1163 costs $80 million in the next two years and benefits just one interest group — Service Employees International Union (SEIU).

This SEIU-sponsored measure claims to protect vulnerable adults. What it really does is force taxpayers to pay for the watered-down training of union members, with inexperienced and uneducated trainers managed by SEIU, eliminating the current training conducted by medical professionals and credentialed educators — who are licensed by the state.

How does SEIU propose to pay the $80 million price tag of I-1163? SEIU’s selfish, cavalier approach to the current budget crisis is unconscionable. Whose medical services will be eliminated to pay for I-1163? Whose school lunches do they intend to cut? Whose taxes do they intend to raise?

Taking Sides – The Herald

Then came the issues of Initiative 1501 in 2016.  Was the motive behind this Initiative for the benefit of SEIU 775 or the people receiving care?  It’s pretty clear to me that this Initiative had nothing to do with better training or access to care.

SEIU 775 was angry that the Freedom Foundation was informing Home Care Aids of their right to a choice – if they wanted to pay union dues or not.  Because of this SEIU 775 developed the initiative 1501 and promoted it as an initiative to increase penalties for crimes against vulnerable individuals – sounds good to me – but one needed to look behind what sounded good and understand the intention behind the initiative – to gain full control of access to care for vulnerable individuals by SEIU 775.

Intent—2017 c 4 §§ 8, 10, and 11 (Initiative Measure No. 1501): “It is the intent of part three of this act to protect seniors and vulnerable individuals from identity theft and other financial crimes by preventing the release of public records that could be used to victimize them. Sensitive personal information about in-home caregivers for vulnerable populations is protected because its release could facilitate identity crimes against seniors, vulnerable individuals, and other vulnerable populations that these caregivers serve.” [2017 c 4 § 7 (Initiative Measure No. 1501, approved November 8, 2016).]

Why is it that only the Home Care Aides License information on the Department of Health Professional License Registry is prohibited from being viewed unless one knows the exact name that the HCA is registered under?  Why not restrict EVERY type Healthcare License/Certificate if the real reason is to protect vulnerable individuals?  HCAs are not the only people involved in the care of this population – but they are the only healthcare professional that is required to be part of the union SEIU 775.

Debate on SEIU’s intents

SEIU 775 purple.jpeg

SEIU 775 is a union that represents longterm care workers, who provide care services in-home, in nursing homes, and adult day health services. The union sponsored Initiative 775.

The Freedom Foundation, a nonprofit free-market think tank, believed Initiative 1501 was an attempt to stop the organization from accessing the SEIU’s list of unionized caregivers to tell them union dues are elective in light the U.S. Supreme Court case Harris v. Quinn. Because the measure includes language stating “neither the state nor any of its agencies shall release sensitive personal information of… in-home caregivers for vulnerable populations,” the Freedom Foundation contended that access to the SEIU’s list of caregivers would be prohibited.[5]

The United States Supreme Court decided Harris v. Quinn in June 2014. In a five-to-four decision, the court struck down an Illinois law authorizing the SEIU to collect a “representation fee” from their in-home health workers’ wages to cover services the union is legally required to provide. According to the majority opinion, the law violated workers’ First Amendment speech rights to not provide financial support to collective bargaining. [14]

Through a public records request, the Freedom Foundation obtained a list of workers and encouraged them to stop paying fees to the SEIU. Adam Glickman, SEIU 775 secretary-treasurer, said his union was sustaining membership in 2015. He stated, ‘It’s hard to find other workers who aren’t CEOs who have seen their wages double.” Glickman also called the Freedom Foundation “radically anti-union.”[5] The Freedom Foundation, however, contends SEIU 775 has not done enough to inform their workers about Harris v. Quinn.[15]

SEIU 775 attempted to stop the Freedom Foundation from obtaining a list of its members in court. The union was unsuccessful, and the Freedom Foundation obtained a list of members in September 2016.[16] Glickman said the conflict had more to do with members “protecting their clients and protecting their own personal privacy and security from any number of organizations” than Harris v. Quinn.[3] Glickman claimed his union’s workers “wanted to take action to protect their privacy and the privacy of their clients.”[5] He also said language protecting caregivers’ “sensitive personal information” was included in Initiative 1501 because “there’s a loophole where any of these scams or telemarketers could get the names and contact information of the in-home caregivers”

In researching this issue – I was astounded by the amount of money SEIU 775 raised and spent.  I was not surprised by how many applicants failed to take the certification test – even though the Department representative on the appeal claimed there were not any problems and almost all applicants completed the certification.  Data from the Department of Health tells another story – to be continued. . .