My autistic son Luke was discharged recently after a month in a Washington State King County Evaluation and Treatment Center. My understanding is these treatment centers are partially funded by the State of Washington. They do short-stay commitments for clients who present with severe mental illness. Luke has now returned to voluntary placement, although with extreme changes that include living in a hotel!
Many folks including medical professionals do not understand voluntary placement. Every state is different. Luke was introduced to a group care facility on 3/1/18. This place was identified by Luke’s case manager and I was able to look into the facility and agency prior to placement. At the time, the agency did not share with us that it was bought by a California company and would soon be going through transition. When this was understood, it was really too late to do anything about that and to be honest with you there was no other placement offered. We had been looking for three years already. Therefore, placement went forward.
This was the first time ever he was voluntarily admitted to be housed by our state. This is not a decision taken lightly. Several reasons cause this to become a reality for some families. Here were the most important reasons that led to our son’s placement: A. Family dynamics changed. I was not living with Luke’s dad any longer. B. My health and Luke’s dad’s health had changed dramatically. C. Luke’s behaviors were becoming increasingly harder to handle by his aging parents who were worn out. D. No one in Luke’s immediate family was living near to help us and Luke’s dad would not allow a move to another state that I had considered.
Voluntary placement does give some control over to the state, but does not take away the parents or guardians authority to move their child out of that placement. I found guidelines that explain the process, but it is by no stretch of the imagination everything that goes into an agreement to place one’s child into state care. Here is a summary of what defines placement based on our state’s administrative codes:
“….Before a child may enter voluntary out-of-home placement, the child’s parent or legal guardian must execute a voluntary placement agreement. The voluntary placement agreement must specify:
(a)That the child’s parent or legal guardian retains legal custody of the child;
(b) That the department is responsible for the child’s placement and care;
(c) That the signature of the child’s parent or legal guardian is required;
(d) The legal status of the child;
(e) The rights and obligations of the parent or legal guardian;
(f) The rights and obligations of the child;
(g) The rights and obligations of the department while the child is in placement; and
(h) That any party to the voluntary placement agreement may terminate the agreement at any time…..” CREDIT: WA STATE LEGISLATURE WEBSITE
Obviously this is the minimum answer to a very complicated process. I wanted to touch upon it though because many of my colleagues and friends believe that I have given my son over as a ward of the state. This is not true. However, when you give permission to the state to assist in housing your child, you do give up some control . This is where things can get very difficult and one must be strong. NAVIGATING social services is not for the faint of heart.
This decision to place Luke was based on what our state calls the Core waiver. The other two waivers are called Basic or Basic Plus waiver. These two Luke had been on when he lived at home. As soon as the need for out-of-home placement is requested, Luke was placed in the CORE waiver. This is not a slam dunk. It takes years for someone to get on the CORE and even if your child is on it , it does not guarantee success in finding placement. In 2015, we were unsuccessful based off the fact there was no agency available to serve Luke. In March of this year all that changed. We placed Luke . Yet as I write this Luke has been housed in a hotel going on a month.
We believe an apartment has been found, but have not been shown that placement yet. So far I find the lack of urgency a sad state of affairs and I have requested the help of the ombudsman to work on behalf of Luke’s case. The ombudsman is a nonprofit who has stated to me Luke’s delay for proper housing is unacceptable. Hopefully next week we have more information.
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Thank you for posting this update..I have been wondering how things are going. I continue to keep you and Luke in my thoughts and prayers. I hope things get better soon.
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Kelly, this is such a difficult time. I am trying my best to educate myself because the new case managers at times seem to want to keep me in the dark when I ask pressing questions . I think I have not mastered the right questions to ask and/or there is such a lack (define that as you may) overall in this part of the state’s obligations–so we are left always in sadness if we made the right decision and/or could we have done more or perhaps less to make this time less stressful for all. I really do not know. Thank you for reading!
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I am so sorry to learn of this truly tragic course of events. I too am adding my prayers and thoughts for you and Luke’s dad, as well as for Luke. The state (whichever state it may be) these days is a pure mess for those with developmental/physical/or emotional challenges. I hope all of us live to see things change for the better, but I don’t believe it will happen soon. Most of all I hope that Luke will be safe in his present environment. Thank you for taking the time to share with all of us. I just graduated from my CASA of San Bernadino Co. training and despite what I learned, it was not enough to help. It deals with foster children, but it too is a pretty dismal situation for them as I am sure it is for the other children and youth I previously mentioned.
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There seems no urgency. I am not sure why these folks do not understand if good parents get to this point in their lives- that its time for a proper standards of care to be met with dignity.
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Alesia – I couldn’t agree more!! Please let me know what I can do to assist you.
Your friend … Mary Ellen
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Mary Ellen, I appreciate your comment. It is a running theme to hear folks say this is a “tough” situation and do not know what to do about the problem. This tells you right away that when we discuss this issue with several folks and no one knows the appropriate way to handle the issues- we are in deep trouble as a country. Thank you for wanting to help.
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Oh, Alesia, this is so darn hard for, Luke, and all concerned. I can’t imagine what strange world it’s like for Luke in a hotel, but hopefully the case worker and others will figure it out, as painfully slow and seemingly questionable as it seem to be. You need to keep reminding yourself that you’ve been doing the very best you can for Luke for his entire life. You’re doing the best you can for him now, too, because you simply cannot be his solution on your own. It’s all heartbreaking, and by writing about your situation you’re reminding us all about all the families that have special needs adult children with too little support. We have a long way to go as a society. Take care of yourself.
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I think the ombuds will help. The agency finally called her Friday evening after making it very clear to them that Lukes placement in a hotel is grossly unacceptable at this point. I hope to hear of something by next week. There is a lot of pawning responsibility to someone else. Its unreal. Truth be told there are people who seem to not care and are just not willing to work toward a timely solution. Thank you for reading as always.
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Alesia, my first sentence should have said “… so darn hard for you, Luke, and …”
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I understood. I get in a hurry when I am typing and even when I slow down to reread it–I always miss something!!! I had two edits I needed to do as soon as I published this post even after spending quite a bit of time working on it!!! Go figure…..hahaha
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so sorry to hear about this Alesia. Keep the faith, everything would be okay in the end.
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Arlene, That is certainly what I do believe . I think it is , however, important to just put this information out there for others to learn and become acquainted with a tough system . I think the biggest point I make is that we kept Luke in our our as his parents until he turned 25 years old. I am not spring chicken. I had Luke in my 30’s!!!! Hope all is well with you my dear and thank you for reading.
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You are welcome Alesia. It really must be tough for all of you including Luke. Hope you all stay well enough to face everything.
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Definitely planning on it. Placing Luke now hopefully makes things easier in the long run as Luke learns a new normal. But we need to get him out of the hotel that the state has him housed in for now.. Driving me crazy.
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i’m so sorry that all of you are going through this. i hope that the state can resolve it for you in a timely manner, it’s already been too long –
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Exactly. This is also the fault of the agency they hired . It is a faulty system that needs a primary person handling Lukes case instead of everyone passing the buck. The system is failing Luke. We will keep being hopeful. Writing this particular post educated me because I went to our regulations and learned a lot from them. Always educating myself!!😂
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I just read all this and all the comments. I don’t know how you deal with all this. When mom and dad went to the nursing home it was a nightmare that had me pulling my hair out. You are incredibly strong and I’m so thankful you are able to share all this. It must be hard. I love you dear cousin and of course, keep you and all the family in my prayers.
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Joyce, I wrote this with an eye on reading the “rules” on rehabilitative living so this post actually helped my emotions a lot!! We need to share this so others will hear how this parent try’s to put a face and a pulse on the problem.
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It is so very sad what happens or doesn’t happen to young adults when there is a needs such as Luke’s or my sisters daughter. I KNOW it is frustrating. You are doing a good job in finding out how to help Luke.
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Thank you Marlene. I would love to talk with your sis sometime. She is local right?
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Alesia. you have much courage. what does the hotel residence provide for Luke, in terms of monitoring and support services? ”peggy
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Luke has an agency onsite at the hotel. They have 1:1 staff with Luke only 4 days a week. The other 3 days is with his parents. The process has been grueling due to almost no communication from this agency that was chosen to take over for the states responsibilities. The state through those codes I mentioned at the end of my post should be making sure the agency adheres to proper standards. Not happening. I hope it does soon. Thank you for reading!
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