“He’s 13 years old, autistic” – Austin Jenkins

Thank you, Austin Jenkins, for writing your article “He’s 13 years old, autistic and stuck in the hospital for the holidays. He’s not the only one. (KUOW.org, December 15, 2021).

This issue has been developing for many years and it should come as no surprise to those who have been involved with Developmental Disabilities and the limited resources, tangled opinions, and even more tangled politics that are the driving forces behind decisions and reports provided to our legislators to make changes to our state’s laws.

The passage of Senate Bill 5459 in 2011 was one such bill that directly affected supports for our youth (21 and under). This bill essentially eliminated in-state options for those with very high and crisis level support needs – necessitating the need to send these children out of state – far away from the natural supports of their family and local community members.

The final bill report can be found at this link but the summary is quoted below.

Summary: Persons under the age of 16 may not be admitted to a Residential Habilitation
Center. Persons between ages 16 and 21 may be admitted for short-term crisis or respite
care.

KUOW asks for feedback on their stories.  Today, I submitted the letter below. There is much more that I could add but I hope this prompts Austin Jenkins to ask a few more questions, speak to a few more people and reach out to individuals – not the agencies which helped to create this crisis – as to possible solutions that we believe would be beneficial, not only to our family members but for our community as a whole. 

 To KUOW:
 

“A move to one of the state’s four Residential Habilitation Centers for people with developmental disabilities has also been ruled out. They won’t take a 13-year-old”  Why not?  This would be a great question to ask and may be a very viable solution to start to address this growing crisis.   answer to this whole problem.

It’s more than shameful how our state is unable to live up to our constitution and provide appropriate supports for this population  Washington State passed a law in 2011 which prohibits those 21 and under from receiving these supports in our community.  This bill, highly promoted by The Arc is one of the major reasons why families are forced to “choose” supports far away, separating their child from their families and communities.

By removing the choice of utilizing the intermediate care facility option (Residential Habilitation Centers) which have physical space and are currently open in our state, this bill clearly discriminated against our youth who could have greatly benefited by the supports and services at one of these campus settings which have specially trained staff to help habilitate the person so they may return to their community and a less restrictive environment.  This legislation was highly promoted by The Arc and the Developmental Disabilities Council, agencies which are given public funds to advocate on the behalf of our community.

Robin Tatsuda, with The Arc of King County misses the point of how she and others trace the growing problem of youth stuck in the hospitals too.  Unfortunately, without addressing the history of the crisis, we will continue to make the situation worse.  This can be witnessed today as these organizations continue to vehemently advocate for closure of any type of support they define as “institutional” – regardless of the choices of those utilizing these supports and finding them beneficial.

At the time when this bill was in legislation, I was in strong opposition to it.  I addressed this very issue of age discrimination with the Secretary of DSHS at the time (Susan Dreyfus) and she looked me straight in the eye and said, “parents still have choice, they can send their child to another state if they want these services.”    I guess she really meant that because that is what has happened quietly over the past 10 years.

That cruel statement brought me to tears – and still does. While I fully understand an ICF may not be the choice a family would choose, it is a much better choice than what is currently “offered” by our state -that of being confined, restrained (physically and medically) in an isolation room in a critical-care hospital, having a food tray slide through a hole in the door 3 times a day with minimal human interaction.

As a parent of a youth needing these supports, I would be forced to choose an out-of-state option too.  But I was lucky – my son needed this level of support before the discriminatory law was passed. 

Living on a campus setting, being allowed to go outside, interact with others as one is able to, go to the local public school, have vocational training, interact with the community at large and stay connected with one’s family and have other appropriate supports at an ICF can be beneficial to the person and their family.  It can provide time for healing, supports for building new skills and supports to maintain those skills.  It can buy time in a more integrated setting than a hospital isolation room, until an even less restrictive but appropriate community home or pocket neighborhood can be developed.

I know that allowing our families to choose a local, in-state option (which does not need to be built from the ground up – it already exists) can save lives and prevent extreme trauma that these individuals and their families are now experiencing – trauma that they will need to live with the rest of their lives. 

With this crisis only getting worse and with the information now coming forth about what has happened to our youth the past 10 years, I am hopeful that our legislators will be able to see what is happening to our youth, families, and community.  “Shut Them Down” is far from the answer we need – yet this is what The Arc and Self-Advocates in Leadership, People First and the Developmental Disabilities Council will be pushing for this upcoming legislative session.

Please listen to our families – you may not see or hear them – they are too busy trying to deal with the trauma in their lives.  We do have options that can be looked at – options and choices brought up by those who need or have used these supports and have found them to be extremely beneficial.  We may have to dig deep to find them and learn because they are purposely excluded from conversations and decisions by those who claim to be advocates and speak for “our families”

With that being said – as a person with current lived experience of this problem, I support Enhanced Behavior Support Home legislation currently being developed with WAA in addition to removing the discriminatory law passed in 2011 which prohibits those 21 and under from choosing one very viable option which is available in our state.

More to come on this critical issue.

I’ve been quiet this past year due to critical health issues and was going to shut this blog down since I did not have the time, energy or ability to even think about advocacy. But the fact that several people reached out to me in the past couple of months asking me for advice, seeking help for their own advocacy, or asking me to join them in other efforts, has prompted me to keep the blog up for historical references and information that may be difficult to find elsewhere. My hope is to continue to participate and we’ll see how it all transpires as time moves along.

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!