A Hospital is not a Home

Disability Rights Washington and Shawn Murinko have filed suit against the Department of Social and Health Services and the Health Care Authority as an effort to prevent other developmentally disabled Washingtonians from getting stuck in hospitals for months or years at a time, instead of receiving supportive services in the community.
There is one very critical piece of information missing from this article and the suit (unless it is buried in something that I have not been able to see) and that is the option of utilizing the state-operated Residential Habilitation Centers (RHCs) as an intermediate care facility for those who do not need the acute medical care provided in the hospital.
DDA denies admission, even short term, crisis respite, to many who request this service.  DRW and other paid advocacy agencies deny the choices of those who desire these types of pedestrian-friendly communities – often referring to them as institutions and unaware of the true communities and choices provided to the residents who call the RHCs their homes.
In recent years there has been more of a push to look at the RHCs as temporary (intermediate) homes for those who need extra supports than can be provided in a community home (SOLA, Supported Living, group home or family home) but DDA continues to refuse to honor person-centered planning for those who choose the RHC.
This refusal to allow people who request admission to the RHC is even more puzzling given the extreme crisis we have in our community homes.   In the past couple of years, at least 2 contracted supported living agencies lost their contracts (SL Start and Aacres Spokane) due to negligence and death of at least 2 residents.  These agencies provided “support” services to over 200 people.
Another recent situation concerned Kevin Alspaugh.   Kevin is 27 years old and is autistic.  He had lived at Fircrest (an RHC in Shoreline) for several years about 4 years ago.  He stabilized and returned to his home community in Bellingham and did great in a group home for the past 4 years.  Kevin then had some issues related to medication changes and became extremely agitated and his group home dropped him off at St. Joseph’s Hospital in Bellingham and refused to provide care any longer.  Keven basically lived in the SECU (Secure Emergency Care Unit) for months in isolation because DDA would not honor his family’s multiple requests to have him return to Fircrest for stabilization.
At one point, the hospital let Kevin leave, barefoot and in scrubs, and did not notify his family (mother is guardian).  Kevin ran over 2 miles at rush hour and across extremely busy arterials and found his way back to his group home.  When he arrived there, the manager called Kevin’s mother to notify her.  Kevin had bloody blisters on his feet and was lucky that he did not get hit by a car.  The police came and returned him to the hospital and the hospital requested that he be taken to jail – they did not want to care for him.  They told Kevin’s mother (guardian) that he has discharged himself.
Currently,  Miriam Hamilton (age 19) is living in the ER in Spokane and has been there since Memorial day with no end in sight.  Her group home refuses to take her back.  There is another 16 year old at Seattle Children’s who is living in the ER/Psych unit off and on for months unable to be discharged home  – every attempt at discharge in the past several months has ended in an ambulance ride back to Children’s within a few minutes to hours.   There is an 18-year-old young man “living” at Harrison Hospital in Bremerton.
I’m sure there are many others too.  Hopefully, DDA is at least tracking those in the hospitals now but the fact that we have space and trained providers at state facilities that could appropriately care for these individuals without restraining or isolating them is unconscionable.
It’s more than shameful that DRW and other paid advocacy agencies are not addressing this issue – they seem to be more concerned about their political issues and denying the choices of people than actually trying to create solutions.
I would be more than glad to have a conversation with you or provide you with more information on this very complex situation and also provide information on viable options and choices that could provide stability for these individuals.
We can do much better.

Evaluate the damage first

In King County, Washington State and across the nation service and employment options for people with significant disabilities are being taken away.  Washington State decided to begin the phase out of pre-vocational services and transition participants into employment or community inclusion services in 2015.  The process was completed by January 2019 in King County.

Gold Guy Kicked Out

Important Definition to understand and remember when reading any data regarding “EMPLOYMENT” in Washington State when connected to people with Intellectual and Developmental Disabilities;

EMPLOYMENT –  gross wages are anything greater than ZERO during the previous 3 month time period.

 

We ask that the JLARC report be addressed and an evaluation of the damage done be completed prior to any more transitions and forced choices be made for this population.

Despite it being an objective of Developmental Disability Administration that DDA services provide quality of life benefits for clients, such as choice, relationships, integration in the community, and competence, there is no tool to measure this and so, unfortunately, we are unaware if the person’s choice was honored or if the changes have affected their quality of life.

This is what has happened in King County –  there were 143 people in pre-vocational services prior to denial of services.  These people were employed and working an average of 14.6 hours a week – some of this time was paid and some was not paid since other activities also took place on site.

AS of May 2019, here is the breakdown of what these 143 people are doing and what services they are provided:

37  – people do not have any services or open contracts – this could be for a variety of reasons – at any rate, they are not receiving employment or community inclusion supports

62 people are authorized for employment support – only 24 of these people are actually employed though

Employment rate of 39% – working an average of 6 hours a week 

44 people are authorized for community inclusion

Community Inclusion – 4 hours a week of community activities

Due to the forced choice and transition, people in this population went from an employment rate of  99%  to about 17% employment.  This is how Employment First works in Washington State.

2015 – 143 people employed in PVS  with 99% employment rate

2019 –   of those 143 people in 2015 only 24 are “Employed”  – this is an employment rate of 17%

  • Authorized does not mean the person is actually receiving any services or supports. It just means that they are authorized to receive those services/supports if they are available.

 

  • Employment First in WA means that one MUST utilize employment services for at least 9 months prior to Community Access services – these cannot be provided concurrently. There is a special waiver for a select few who may not need to “participate” in employment services for 9 months prior to Community Access services but this is very rare.

 

  •  For Individual Employment, support hours up to 26/month are paid at $73.00/hour, above 26/month are paid at $30/hour and the total fee is adjusted up to a maximum payment of $2,700/month – this cap will be increasing though.

Information provided by King County Developmental Disabilities Administration and State Data

Time to get back to work!

Now is the time to start planning for the upcoming legislative session.  As a community member, it is very, very difficult to be aware of these planning meetings in which paid advocates come up with their annual agenda.  Typically, the issues are not shared or discussed with the community and public until it’s a done deal.

This year, I contacted the King County Developmental Disabilities Administration regarding the legislative committee and planning sessions.  For some reason, the meeting dates and participants were not being shared on the website.  After my inquiry, I have received the information that I requested and an invite to the upcoming meetings.

I greatly appreciate the opportunity to participate in these planning meetings. With that being said, I am also disturbed by the gas-lighting that occurred at the meeting.

The issues that I raised at the meeting was the fact that in Washington State (an Employment First state) which means that a person age 21 or older with intellectual/developmental disabilities MUST try employment services first for 9 months before accessing community inclusion services under “Employment and Day Programs”  within DDA.

In addition, a person utilizing the employment supports (regardless if they are actually working at all or have minimal hours (5 or less a week) they are restricted from accessing community inclusion.  These two supports are mutually exclusive.

Many times these people have no community engagement or opportunities for meaningful interactions during this first 9 months or afterwards.  When these people are left without active supports, they lose skills and become more isolated and we believe that these supports should be able to be accessed concurrently (as many other states offer them.)

There were several representatives from The Arc of King County (paid advocates) at the meeting in addition to representatives from the state DDA, King County DD Admin, and representatives from other agencies which serve people with IDD.

The Arc of King County Director of Advocacy and the Arc of King County Family Engagement Coordinator both spoke up and stated that I was wrong in my statement that people receiving employment supports were not able to also access community inclusion.  I questioned when that change had been made and I was told that it was made several years ago and was in the waivers.

Being “corrected” by these paid advocates and “experts” at this public meeting was really a slap in the face.  They provided false information with their attempts to discredit what I was advocating for.

I followed up with emails to both of these people and to the King County Administrator who was running the meeting.  When questioned and asked for resources to back up their comments, both of these people wrote back to me that I was CORRECT in what I had said at the meeting.

What was the purpose of them speaking out against my comment?  What was the reason that they provided false information to those in the legislative planning meeting?

Employment Programs – DDA Fact Sheet 2019

Community Inclusion – DDA Fact Sheet 2019

 

 

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.