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?”

 

Section 14(c) National Online Dialogue

The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) is hosting an online dialogue to engage stakeholders in a policy-making process through ePolicyWorks.  If you would like to join in you can access the discussion from this link.  You can register and than write your opinion, like or comment on another idea someone else submitted.  It has been great to see this participation.

There are 3 sections of topics – “Use of the Section 14(c) certificates and observed trends”,   “Experiences transitioning from the use of Section 14(c) certificates” and “vision for the future of work and workplaces; the landscape over the next five to 10 years”

 

DOL header

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There are several themes that pop up over and over again and it is really wonderful to see how much support there is for CHOICE to be honored.  But even though CHOICE is supported there are many who disagree and do not respect that choice.

There are SO many issues that are involved which are all very complex and inter-twined.  One cannot change something without understanding how all these issues intersect.  This is even more difficult when people misunderstand the rules of Section 14(c) and how it is intended to be used.

This issue is not just a simple matter of paying the disabled person minimum wage and then they will be independent and off public assistance.

This past legislative session in Washington State there was a bill that was sponsored by Rep. Noel Frame that passed into law after at least a couple of strikers, a few amendments, and much work by constituents and legislators.  Engrossed House Bill 1706 as passed into law

This law has no information regarding increased training, job skill development, or funding for supports needed by these disabled employees in order to work.  It will need to be evaluated before any more transitions take place.

During the House Floor discussions, there were some telling comments by legislators that both indicated that they understood the situation and that they did not understand the full situation.

Representative Tana Senn (41st Legislative District)

“We just heard on this house floor about people with developmental disabilities being needy, not knowing the difference between 5 dollars and minimum wage and focus on the parents.  But I’d like to bring us back to both the people themselves with disabilities and the businesses that hire them.  My husband works for MOD pizza and their entire business model is to do second chance hiring – whether it’s people who are recently incarcerated and now back out in the community or people with disabilities.  And when I asked him if he pays and if his company pays people with disabilities minimum wage – he kind of looked at me askance and asked “why would we pay anybody less money for a job that needs to be done.  He also emphasized that they talk about people at their company as those with special abilities because they know that their co-workers and the community around values diversity and by having people with special abilities in their restaurants – and they have over 500 across the country –  that they know that they are demonstrating inclusivity and diversity and this actually improves the work environment, improves the services and the food and the environment that they deliver to their clients – and so again Mr. Speaker, this is something that all workers can appreciate , that businesses can thrive off and Mr. Speaker, I see no reason why we would pay anybody less for their special abilities to do a job that needs to be done”

  • Questions To Representative Senn –
    • Do the people her husband employs at MOD pizza have 1:1 supports ?
    • If no, what type of support does the disabled person have in order to do their job? .
    • Does she understand that those supports are not paid for by the employer?
    • Would MOD pizza still employ these people if they had to pay another person to be their support or the manager had to devote extra time and energy in management to support this employee?
    • If MOD pizza needed to provide the support for the employee, would that employee’s hours be cut due to cost?
    • Are these employees at MOD pizza considered “high acuity” or “high support” employees by DDA?

 

Representative Mary Dye (9th Legislative District)

“Many of those in our community with high acuity, meaning they are more needy in their wrap around services in their employment,  they go into independent employment in a private industry, but they have job coaches and people surrounding them to help them be successful and have that time.  Every time we impact that program it means those high acuity people, those people with severe disabilities have less opportunity, less time in the workplace.  That is the piece that hurts the most when we pass bills that we think are right but in actuality, are absolutely devastating to those people who would otherwise be out in the community working”

Representative Michelle Caldier (26th Legislative District)

“I had many of these employment providers coming to my office saying “hey, look at what we are doing, we’re giving these folks a job, we’re job coaches, and it wasn’t until I had parents come and talk to me that I really saw the complexities with employment for people with disabilities.

I learned how much these employment providers make off of the backs of individuals who are developmentally disabled.  I also learned   that it pretty much eliminated group employment  throughout our state and a lot of those parents told me – they said what my child wants is – they’re very social – they want to be around other folks that they can communicate with – maybe they’re not doing the job at the same speed but you know what – they’re able to have the social interactions that they would not get otherwise .  And now because group employment is pretty much eliminated across our state – now they’re in a job that they don’t necessarily like .  We need to make sure that we have options  for people – that there’s opportunities for folks and what we really need to do is dig deeper and listen to the families and listen to what they say – not the people who are making money off of people with developmental disabilities – and for that reason alone, I’m going to be voting no and it’s because I believe in listening to the parents of the folks that this will impact – thank you”

I would like to thank Representatives Dye and Caldier and the others who stood up and voiced an appreciation and understanding of the choices that we need in order to best serve and support our community members with significant disabilities.

Just paying these individuals more per hour will not erase their needs for supports and services.

 

 

Congratulations, Thomas!

Thomas was awarded a badge at work today for his 4 years of employment at Lowe’s Home Improvement!  He was so happy.  He loves his job, his co-workers, job coaches and customers.  We often run into his customers when we are out and about in the community doing other things and he gets so excited about seeing them!

 

 

Thomas was able to secure this job through the King County School 2 Work program.  They had a pilot program several years ago in which they worked with students that would have been considered the more “difficult to place” in community jobs.  I’m so glad to say that we were able to appeal to allow Thomas to participate in the program.  Thomas was also the only one in his group to have a job before they “graduated.”  While he still works for the same company, the job has changed as he has gained skills and they have discovered the great abilities he has which he has put to good use there.

Supported employment (or Community Integrated Employment – CIE) is one option that people with intellectual and developmental disabilities can choose to utilize if they want to try to work.  Supported employment is very individualized and may take many months to find a job that is the right fit for the person .   Job supports are also individualized – some people need 1:1 support throughout their working experience and others may just need a job coach to check in once a week to once a month.

Supported employment is ideal for Thomas.  He also lives in supported living so he has private transportation to and from work each morning for his hand-to-hand transfer from care-giving staff to job coach.  Given that Thomas also has medical treatments that he needs 3 x week, his care-giving staff then pick him up from work and take him to his doctor appointments.  This makes a full morning for Thomas – he’s ready for lunch by the time he gets back home.

Thomas does earn a bit above minimum wage in his job which is paid by his employer.  The funds for this are funneled from the Federal/State government through the county which pays the vendors for the job supports.  With Thomas typically working 7-9 hours a week, he works more hours than average for someone with his support needs.

While this is a great choice for Thomas, it is not for everyone.  We need to keep alternative choices and opportunities available for those with differing needs and skills.  For instance, there is group supported employment which many people prefer.  Often times the employees in these jobs may make less than minimum wage with a special certificate issues from the state (they are typically called 14 c certificates) Many people prefer these jobs since they are with their friends and enjoy the group experience too.

Our state has already abolished all pre-vocational types of jobs but in other states these may still be a choice.  We need to keep these alternative choices available for those who choose this type of job training.  We can’t talk about person centered planning and then remove choices.

I need to add that is it only due to the “village” that supports Thomas that he is able to be so successful in his achievements:  His village is his family and friends, Provail (employment vendor), Alpha Supported Living (supported living agency) in addition to his co-workers at Lowe’s.

 

 

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.

Abuse and Neglect in the Hospital

I am beside myself with anger, frustration and helplessness regarding the situation with our friend, Kevin.
Kevin has not been “on hold” in the ER at PeaceHealth St. Joseph Medical Center in Bellingham, Washington since April 24, 2019 (for this episode)

PeaceHealth

Below are messages that I received from Kevin’s mom and legal guardian last night and this afternoon.  Kevin is a 26 year old young adult.  Kevin is autistic and is a vulnerable adult with a legal guardian.

“Cheryl, the hospital let Kevin leave the hospital and he was on scrubs and no shoes running down one of the busiest streets in town. He made it to the respite bed where he was a couple of weeks ago. He ran in the middle of cars for 2 miles. They called me and let me know he was there, the hospital called me after the respite bed told them he was there. He had blood blisters in his feet. Then they had the audacity to tell Tom (respite care administrator) that Kevin checked himself out of the hospital. The police came later and took him.

“The police took him back to the hospital and told the ER manager that Kevin is gravely disabled and should not be let go in streets like this.

I have asked for a DMHP assessment, but they are giving me the run around

He has blisters on his feet and sticks stuck in his skin – the doctor is supposed to see him sometime today.

They just called me and said they will let him leave again. I guess the DMHP assessment was not done because it was done when he first got to the ER.

It’s a never-ending mess.”

I went to the Bellingham police station and they said that when they drop him off at the ER they let the hospital know that he is a danger to himself and others and needs to be in involuntary confinement.  The hospital disagrees.  I hope he does not escape again tonight – it was a miracle that he didn’t get hit by a car yesterday.

This ongoing nightmare has been reported to the DD Ombudsman, Adult Protective Services, the Department of Health and Developmental Disabilities Administration yet no action is taking place and the hospital is continuing to neglect Kevin and put his life at risk.

As a mother, nurse and advocate I am totally appalled and sickened by the lack of attention and concern that these state agencies, which are there to provide protection and care and the hospital which is to provide safe, appropriate healthcare continue with this neglect.

This is more than insane – is anyone listening?  Does anyone have any solutions?

Kevin’s mother has requested over and over again to allow Kevin to return to Fircrest Residential Habilitation Center (one of our States’ Intermediate Care Facilities) but DDA has continued to refuse saying there are no beds.  If this is an entitlement and there is “no refusal” how can DDA say there are no beds?

Is the only choice to let the hospital and state agencies continue to neglect their duties until Kevin runs into the street and gets killed by a car?  Then what?

Susannah Frame – King 5 Investigator – Please read this and help!

 

Kevin is trapped!

Many have been following the issues of those with IDD who have been dropped off and abandoned by their group homes into the hospitals.  This is not a new issue but one that has finally been acknowledged as happening.  We need a solution  – NOW

Recently, Keven, our 26 year old friend has been “on hold” in the Emergency room at St. Joseph’s Hospital in Bellingham, WA.  I sent an online complaint to the Washington DD Ombudsman and maybe the more complaints they receive, the better the chance at a positive solution – not only for Kevin but for others.

Here is the information that I submitted on my complaint – feel free to submit your own complaint regarding the issues that are happening. DD Ombuds complaint submitted May 6 2019

Today, Kevin’s mom informed me of the following information she received:

Kevin’s situation…

This afternoon after visiting Kevin at St. Joseph Hospital, I was told that if he attempts to leave the unit (SECU).

.. they will let him leave the hospital and 911 will be called.

When is this nightmare going end??

 

 

Into Adulthood – P2P online “support”

These elementary school actions taken by a person named Kate Harris (I have no idea who this person is other than the fact she is a member of the Into Adulthood  Parent support group and does not like the “tenor” of my posts last year) and The Arc of King County Parent 2 Parent group moderators is very puzzling to me.  I thought we were all adults – I would like to try being an adult but sometimes it is very, very hard when I am faced with these behaviors of those who are there to support parents of disabled young adults.

parent to parent support groups through the Arc of KC

 

From: Cheryl Felak <cherylfelak@msn.com>
Sent: Monday, April 15, 2019 8:57 PM
To: Robin Tatsuda
Cc: Rachel Nemhauser
Subject: Re: into adulthood group

Hi Robin,

I’m sending this whole document in an email for your review.  There seems to be some missing pieces from what you remember since I did answer your question regarding the rules.   I have highlighted those responses since there is a lot in this document.

Intoadulthood blocked

The original message I received that informed me of my immediate removal (prior to any discussion or clarification of points I expressed) from the group and follow up letters are all included.  I’m curious if The Arc had problems with it, why wasn’t I notified or asked to clarify some issues.  My goal was to have some discussion about this issue that was affecting many in our community and to inform those who may not have been aware of what was happening behind closed doors.   I understand we have a difference of opinion regarding this – but have you asked to see any of the documentation I have which backs up everything that I have written?  I would be more than glad to share – but at this point, it doesn’t matter since it’s all water under the bridge anyhow as far as issues with Seattle are concerned.

Also given that both Ramona Hattendorf, writing on behalf of The Arc of King County and Robin Tatsuda, (who does not identify as an employee of The Arc of King County) wrote letters endorsing the elimination of special certificates, it is an issue that parents, caregivers, family members of those affected have a right to know and understand what is occurring – especially when it directly affects them.   In fact, there were several letters written by members of the IntoAdulthood group to OLS who opposed the elimination of the special certificates.

Support works two ways and when concerns are raised and just blocked rather than addressed, it then becomes a form of harassment when people in a support group are not allowed to raise concerns on issues that affect them.  The rules of this group state “we focus on support and information” the sharing of information, even if not pleasant should be supported.

I fully understand that the post I made does not agree with the moderator of this group but that does not mean that it is not of importance to the participants.    If I had been questioned at the time, I would have gladly had a conversation to discuss the issues.  Again, at this point, it doesn’t matter and I have no communication or interaction with a particular person.

I would just like to have that explained a little bit more.  I can provide documentation for all issues addressed in this post which substantiate what is written.  I was not asked for that though – it was just assumed I was attacking a particular person (that person was a public servant who self-identified as the person responsible for getting the special certificates eliminated – I certainly did not call them out for something that they were not already identifying as)

If this group is actually for “support and information” then allow it to be that – not all information is pleasant but it may be information that families need to hear -they can always choose to delete or not read if they don’t want to know. But I do have issues with the moderator deciding what information they want the parents and families to know.  This is the real problem I have – I know I and others have fundamental differences of opinion – discussing those differences can lead to healthy solutions.

Again, I have no personal issues with the self-identified person responsible for ending sub-minimum wage in Seattle and the only reason that name was mentioned was due to that person identifying themselves as the person responsible and acting as a public servant in Seattle.  If there is something wrong with asking for accountability and transparency, please let us all know so that we understand the hidden rules to this “support group”

As written in the attached document, I agreed several times to abide by the rules.  I would hope that the moderator is able to do the same.  If not, please let me know that I will not be allowed to participate so I know where I stand.

Thank you,

Cheryl

The next email I received from Robin Tatsuda :

From: Robin Tatsuda <RTatsuda@arcofkingcounty.org>
Sent: Tuesday, April 16, 2019 5:56 PM
To: Cheryl Felak
Cc: Rachel Nemhauser; Stacy Dym
Subject: RE: into adulthood group

Hi Cheryl –

I have learned that you have been participating in the “Into Adulthood” yahoo email group using an alias or having another user post on your behalf.  Either way, this is a violation of our group guideline which states: “Do not post comments under multiple names or using another person’s name”.  You received our full list of group rules and confirmed that you agree with the terms on April 10, 2019, five days before the post in question (see copy at the end of this email).

You have now demonstrated a second time that you are unable to abide by the group rules, most concerningly within one week of reviewing and confirming your understanding of the rules.  Because of this we have determined that you are banned from this group for a minimum of 1 year, after which we will explore your understanding and ability to abide by the group rules in order to rejoin if you desire.

You are welcome to discuss this decision with myself (Robin Tatsuda) or The Arc’s Executive Director (Stacy Dym).  Additionally, our policies include opportunity to participate in a mediation process should you feel you are being treated unfairly.

~Robin Tatsuda

—–Original Message—–
From: Charlie Bean charliebean713@gmail.com [IntoAdulthood] <IntoAdulthood@yahoogroups.com>
To: IntoAdulthood <IntoAdulthood@yahoogroups.com>
Sent: Mon, Apr 15, 2019 11:20 am  (It appears this date/time was edited from the original date/time of April 10, 2019 at 12:09PM)
Subject: Re: [IntoAdulthood] Housing — supported living

I know that supported living is expensive and for those with extremely high support needs it can be more expensive than and RHC.  there was a good question brought up in some thread regarding the hours of supported living care and that one needs to be on the core waiver – the question was asking about this if a person only needs an hour or two a week and that is considered supported living – why does that person need a core waiver when there are others who do not have a waiver but could really use the extensive services.  I’m really curious about this because that does sound as if the core waivers may be used by people who may not really need full support services – I guess there is always “the risk” of institutionalization and it’s based on the CARE assessment and institutional level of care -but sometimes I really wonder what that level of care is in the real world.

With that being said, I was also at the “listening session” for The Arc and the supported living person stood up and said that supported living was not sustainable. Unfortunately, care is expensive but it doesn’t help when the legislature is not informed of the real cost of care but is instead just told an average cost – average does not fund the services that some of our loved ones need.  I really wish there were some more options and there are but not in this state and not with the mindset that many of the advocacy agencies have regarding what is “community” and taking away choices because it’s not community enough for what they believe is best. For us, it goes back to person centered planning and what that person/family needs and chooses.

Our son lived in an RHC for several years and has lived in supported living for the past 3 years.  There are pros and cons to both but overall we are much happier with supported living managed by a non-profit agency..  The team is much more collaborative and accountable and the care givers do  so much more than the same job description care giver in the RHC.

I would encourage anyone to look at Together for Choice and Coalition for Community Choice and listen to any presentations by Desiree Kameka with Madison House Autism. These are all great resources and Desiree is an inspiring speaker with a wealth of information.
Would love to give more info and share to build a coalition around here but I have been banned from this group from the administrator and a friend is posting this for me.  I am very disturbed by the censorship and blocking of those who are in our community who need support or could share experiences but that’s the way this list is run.  If you would like more information you can contact me at cherylfelak@msn.com

 

Robin Tatsuda, MSW | Director of Information & Family Support

Direct 206.829.7011

She/Her/Hers

For people with intellectual and developmental disabilities.

The Arc strives to provide accurate information in a timely manner, with the highest standard of professionalism.  If you have any comments or concerns about the services you received from The Arc of King County, please contact Stacy Dym, Executive Director at sdym@arcofkingcounty.org.

Phone interpretation available |  Interpretación telefónica disponible | تتوفر الترجمه الشفهية عبر التلفون  | Доступна телефонная интерпретация | Fasiraadda telefoonka ee la heli karo |  電話口譯可用。 |  Có sẵn thông dịch qua điện thoại | 전화 통역 가능합니다

 

email from Kate Harris reporting Cheryl Felak on IntoAdulthood

Note email from Kate Harris dated 4/15/2019 at 12:02 PM – could it have been Kate Harris who changed the date/time on the original post from 4/10/2019

 I did send Kate Harris an email

Hello Kate,
I would greatly appreciate you contacting me and addressing these issues that are “highly inappropriate and offensive”.   There are certainly some misunderstandings about what has occurred and I am baffled about your involvement in this – have we ever met or had a discussion?  If so, I do not recall but would appreciate being reminded and updated.

 

From: Kate Harris <kate@crossroadstrade.com>
Sent: Wednesday, April 17, 2019 5:42 PM
To: Cheryl Felak
Subject: Re: Into-Adulthood questions

Cheryl,

My contact with you has been limited to you to what you posted on the IntoAdulthood list. I found the tenor of your posts that apparently led to your removal to be inappropriate and offensive. Evidently the list managers did as well.

I am disturbed that you recently did an end run around your being removed from the list to insert yourself into a discussion. The list is not a public list. I regret that its contents were shared with you. You seem to either not have regard or understanding for list guidelines, which are there for the wellbeing of the overall community.

Katie

After some back and forth with this Katie Harris person,  I then sent an email to Robin Tatsuda at The Arc of King County.  I would really appreciate a mediation meeting to discuss this issue and to clarify the problems.  Hopefully, this will happen before my year of banishment is over.

From: Cheryl Felak <cherylfelak@msn.com>

Sent: Thursday, April 18, 2019 10:55 AM
To: Robin Tatsuda
Cc: Rachel Nemhauser; Stacy Dym
Subject: IntoAdulthood Mediation

Hi Robin,

Here is the timeline of what recently occurred.  I was trying to clean out all my old emails and came across this very old alias account that I had and I have no idea how IntoAdulthood was even on it but it was so I started to read some of the recent posts on supported living and housing options – something I am very interested in.  So I took chances and wrote this post below and even stated who I was – not pretending to be someone else – on April 10.

Kate Harris, who claims to not even have any interest in the topic I wrote about, states she originally complained last year because she did not like the tone of my postings – she didn’t care about the subject matter.  I was banned at that time for “repeated highly inappropriate and offensive posts”.  After I posted this post on April 10, Kate Harris, again, claiming she doesn’t care about the subject matter, reported me for violation of the rules.  I have no idea who this person is and she states she only knows me through this listserve but she doesn’t like my tone and so has reported me.   Is this how parent support groups are run?  This whole process seems very juvenile to me and certainly not supportive of those affected.

I’m curious how many other complaints have you received about my posts?  I don’t need names but would like to know what the complaints were about

Also, you have accused me of writing this post after I wrote and said I agreed to the rules.  Actually writing this post was the impetus to writing again to inquire about being allowed to participate in the group since I had not heard back after I had previously agreed.

I have no idea how the date of April 15 got on the copy of the post that you sent me to prove that I had demonstrated a second time that I am unable to abide by group rules but it would be the adult thing to do to ask me about it but instead I’m found guilty and banished for a year.

What are the policies of mediation?  Also, as a support group for parents of young adults, is there a parent of a young adult – older adult with IDD who moderates the group?  If not, why not?

Please get back to me about mediation – I would appreciate it.

Charlie Bean <charliebean713@gmail.com

Wed 4/10/2019 12:09 PM

  • IntoAdulthood@yahoogroups.com

I know that supported living is expensive and for those with extremely high support needs it can be more expensive than and RHC.  there was a good question brought up in some thread regarding the hours of supported living care and that one needs to be on the core waiver – the question was asking about this if a person only needs an hour or two a week and that is considered supported living – why does that person need a core waiver when there are others who do not have a waiver but could really use the extensive services.  I’m really curious about this because that does sound as if the core waivers may be used by people who may not really need full support services – I guess there is always “the risk” of institutionalization and it’s based on the CARE assessment and institutional level of care -but sometimes I really wonder what that level of care is in the real world.

With that being said, I was also at the “listening session” for The Arc and the supported living person stood up and said that supported living was not sustainable. Unfortunately, care is expensive but it doesn’t help when the legislature is not informed of the real cost of care but is instead just told an average cost – average does not fund the services that some of our loved ones need.  I really wish there were some more options and there are but not in this state and not with the mindset that many of the advocacy agencies have regarding what is “community” and taking away choices because it’s not community enough for what they believe is best. For us, it goes back to person centered planning and what that person/family needs and chooses.

Our son lived in an RHC for several years and has lived in supported living for the past 3 years.  There are pros and cons to both but overall we are much happier with supported living managed by a non-profit agency.  The team is much more collaborative and accountable and the care givers do  so much more than the same job description care giver in the RHC.

I would encourage anyone to look at Together for Choice and Coalition for Community Choice and listen to any presentations by Desiree Kameka with Madison House Autism. These are all great resources and Desiree is an inspiring speaker with a wealth of information.

Would love to give more info and share to build a coalition around here but I have been banned from this group from the administrator and a friend is posting this for me.  I am very disturbed by the censorship and blocking of those who are in our community who need support or could share experiences but that’s the way this list is run.  If you would like more information you can contact me at cherylfelak@msn.com

This is all documented here publicly so that people are aware of the blocking and censorship that is done by an advocacy group which receives large sums of money from state funds to provide support.  When this agency refuses to have conversations and immediately bans and blocks people they are paid to support based on inaccurate information there is something crooked going on.

Who is the person Kate Harris and why does she care so much – if she doesn’t like the tone of what I write, move on – specifically if she has no interest in the subject matter. why would this person feel the need to write to the list moderators and change the date of a post? It is all very bizarre to say the least.

But for the meantime I am banned for at least one year now  – proven guilty without a conversation or mediation meeting – just outright banned for a minimum of 1 year, after which they will explore my understanding and ability to abide by the group rules in order to rejoin – if I desire.

This is insane!