How to create a crisis – deny services

Way back in 2011 and 2012 when Washington State was “researching” issues related to caring for our DD population, there was a DD Task Force which met several times.  The goal was to discuss the future of DD Care in our state with emphasis on the consolidation and closure of the close the Intermediate Care Centers.

Several of the predictions I had and tried to communicate to other DD Advocates and legislators have come to fruition.  Please listen to the families who are the real experts and survivors.  Advocacy Agencies such as The Arc, Disability Rights Washington and other similar agencies which receive public funds to provide advocacy must abide by their  policies – policies which may not be in the best interest of those actually involved.

  •  SL Start and client neglect/abuse – I reported issues in August 2012 to the legislature.  Senator Adam Kline only provided ridicule and sarcasm in his response to me –

“But I suspect this won’t happen.  I could be wrong, but I suspect that this story’s real value to the RHC advocates is in its expected political effect.  It portrays the RHC families—even the residents—as pawns in a game in which the malevolent community advocates are the operators.  SL Start is the villain in this instance, maybe the Arc the next time, maybe the Governor.  And you are “silenced” by these conspirators.  The victims are rendered mute, while only the conspirators may speak.  The conspirators “manipulate some of our community members.”   Oh, please!”

Obviously, this Senator believes this situation is fabricated to make an issue.  I wish it was but it’s not. This Senator goes on to berate me for being an advocate for safe and appropriate care and categorizes me into the “pro RHC” side.  When will he and others realize that it’s not about sides – it’s about safe and appropriate care for each individual.

April 2018 Headline – Apparently I had some real information that needed some attention.  If only people had taken the time to listen, trauma could have been alleviated.

Washington Shuts Down Care Provider For Disabled Adults, Now Families Face Tough Decisions

Below is an excerpt from the blog post dated September 8, 2012.  I address the issue that DDA did not even consider the issue of DD clients using the hospital and ER as crisis care.

That comes from a different budget so it’s not a factor to DDA.  Well it should be because it greatly affects the PEOPLE involved in addition to adding overall cost to our state’s budget.

While the concept of the crisis team is good, why not use the facilities and services we already have in place to run this program out of? We have the space and expertise to do this already and it seems ridiculous to start a whole new program for something that we have which already works very well.

I believe this was also part of Julianne’s testimony and she is 100% correct in her assessments of the situation.

As a parent who has survived crisis after crisis, I can also tell you that you should look to the hospital emergency room data on how many people are taken there for crisis. I believe you will find a lot more information regarding where folks with developmental disabilities go when they have a crisis. I also know this is the case from working with other families and hearing their stories. Talk to the ER nurses at Seattle Children’s and ask them how many families bring their kids with DD (particularly autism) there for crisis intervention. Talk to the Inpatient Psychiatric Unit doctors, nurses, and staff and Seattle Children’s. I believe you will find staggering numbers. You will see a much different picture than one you may hear from DDD. DDD is not aware of many of these crisis admissions to the hospitals because they are not notified.

What about connecting the crisis care team with the local hospitals and emergency medical response systems? What about connecting with the Crisis Line? I know that not only in our family’s case but in many, many others, these are the systems which we accessed in times of crisis. These are the places in which we will be able to realize the extent of the crisis situation with people with DD.

Please read the report the DD Ombuds   published and consider the tasks outlined to address this critical problem.

Provide appropriate funding to community residential providers and support the ICF to provide appropriate care for DD clients in crisis.

Happy ADA Anniversary – DDC Interview tomorrow!

ON this eve of my interview with the Washington State Developmental Disabilities Council I am thinking of all the people who are not able to have their voices heard.  My hope is that the DDC does uphold the 1999 US Supreme Court Decision Olmstead v. L.C. and that they do honor person centered planning.

My hope is that they understand that “inclusion” is defined by the person and what is optimal for that person.  This has been a very difficult concept for many to understand.  Also, we need to take into consideration all the caregivers and support people and what “inclusion” means for them too.  We are all in this together and we need to work together for what is best for the whole.  Not everyone is going to get their way with everything but that does not mean that there are not success stories.

Updates after the interview –

Please support respite and crisis care

Clients & Families can’t wait another year for help. Most of us have been in the position of having to wait for services….let’s try to cut the wait time for others.

Now is the time to write the members of the House Committee on Early Learning & Human Services.  They are having an executive session on Thursday March 26, 2015.

It is very important that the YVS  (E2SSB 5243)bill be sent moved on. If it does not pass out of committee (Executive Session) it is delayed another year.

This bill will help reverse some of the damage and lost respite care from 2011 when the legislature decided to close Frances Haddon Morgan Center.

Bill information:  http://app.leg.wa.gov/billinfo/summary.aspx?year=2015&bill=5243

Please send comments of support for the bill E2SSB 5243 to the following House Committee Members:

PLEASE~If you have not as yet contacted Early Learning & Human Services Committee in the House regarding E2SSB 5243, please do so now.

You can call their office, or the Legislative Hotline at 800.562.6000 or email them.

Ruth Kagi, Chair                                                          ruth.kagi@leg.wa.gov                         District 32        (360) 786-7910

Brady Walkinshaw, Vice Chair                                    brady.walkinshaw@leg.wa.gov            District 43        (360) 786-7826

Maureen Walsh, Ranking Minority Member                maureen.walsh@leg.wa.gov               District 16        (360) 786-7836

Elizabeth Scott, Asst Ranking Minority Member         elizabeth.scott@leg.wa.gov                District 39        (360) 786-7816

Tom Dent,                                                                   tom.dent@leg.wa.gov                         District 13        (360) 786-7932

Brad Hawkins,                                                             brad.hawkins@leg.wa.gov                  District 12        (360) 786-7832

Christine Kilduff,                                                          christine.kilduff@leg.wa.gov               District 28        (360) 786-7958

Bob McCaslin,                                                             bob.mccaslin@leg.wa.gov                  District 4          (360) 786-7820

Lillian Ortiz-Self,                                                          lillian.ortiz-self@leg.wa.gov                 District 21        (360) 786-7972

David Sawyer,                                                             david.sawyer@leg.wa.gov                  District 29        (360) 786-7906

Tana Senn,                                                                 tana.senn@leg.wa.gov                       District 41        (360) 786-7894

The Arc wants to eliminate respite care

There is so much that does not make sense but one of the top things with advocacy for people with intellectual and developmental disabilities is that The Arc of Washington is against a bill which will continue to provide much needed respite care for people in our communities.

This graph illustrates the number of community clients who receive care at our state’s Residential Habilitation Centers (RHCs).  SB 5243 aims to maintain Yakima Valley School for residents and respite clients.  The Arc of Washington opposes this bill.  Yakima Valley School serves an average of 32 community clients per month for respite  – without this resource our community members will have much less access to the already minimal respite care available.

Community Respite in RHCs

The Arc of Washington supported the closure of Frances Haddon Morgan Center (FHMC) in 2011.  Frances Haddon Morgan Center had a well respected and much used respite program.  Since the closure of FHMC in 2011, it is clear that the need for respite in other RHCs increased.

Please support SB 5243 and help reverse some of the damage done by the bill in 2011 which caused at least one death and led many other people into crisis.   Advocates should be looking at care, protection, choice and progress – not the opposite.  In my experience, The Arc of Washington is not acting as an advocate.

 

Data Retrieved from Developmental Disabilities Administration

Executive Management Information System

June 2010 – June 2014

 

The count for respite clients for each month is the unduplicated count of clients who accessed respite for the month. 

 2015 Developmental Disabilities Bills of Interest – published by The Arc of Washington State

Integrity – legislation passed based on false information

Our state saw some devastating legislation passed in 2011 in Senate Bill 5459:

  • One man died from negligence – there was laundry detergent stored in a milk carton, left on the counter and this man, who had been moved out of his home at Frances Haddon Morgan Center to a “community” home drank it and consequently died.  This man had a known disability of PICA (eating non-food items) but regardless of that, the fact that a non-food item had been stored in a food container is negligence – not accident.   I can only imagine the pain and suffering this man experienced in the few weeks between the time he drank this and when he eventually died.  He suffered immensely.  Yet does anyone care?  There were no charges filed.  If this had occurred in a day care center I can assure you there would have been charges filed but because this man had a developmental disability and the state was his guardian, there is no one person to watch out for him and advocate on his behalf.  
  • Our state has passed a law which discriminates against our youth with developmental disabilities.  Youth with high support needs who could be cared for safely and appropriately in one of our remaining residential habailitation centers are no longer able to access those services.  The only option left is crisis hospitalization or jail.  Is this progress?

What is also very disturbing is that this legislation was passed based on false information which was stated as “facts”.  These “facts” are not supported by the data from which they were drawn but the legislator who sponsored this bill chose to ignore any information that he found “uncomfortable”.  Others, when questioned about the supposed facts told me that they say no benefit in reviewing the questions I raised because the state did the research and  wondered why I would even question what the state provided.  This is they type of “leadership” we have.  This is frightening.

It’s time to pull their heads out of the sand, face the uncomfortable issues and address the questions.  Until this happens and there is a real dialogue, there will not be progress.

I have written to the Research and Data Analysis Division of the Department of Social and Health Services asking them to review the “research” report which was used extensively in this damaging legislation.  I have written to the Developmental Disabilities Service Task Force raising critical questions that need to be addressed.  I am hoping to engage in some real discussions which will tackle real issues and facts.

DD Task Force Committee wrap up

RDA integrity attachment

RDA Integrity attachment

FHMC Quality Assurance Report to Legislature

Are you afraid you are going to lose services? You already have!!

We have all lost a great deal of services and are at risk of loosing more.

If our state continues along the route it is going, with the human experiment of using our most vulnerable citizens as subjects who have not even consented to being involved,  by evicting them from their homes and moving them into more restrictive environments in a different community – we  ALL Lose.

This has been said to be a cost saving measure – it has now been proven and acknowledged that this will not save any money  but will in fact cost more.  How then, if this experiment is more costly than the services these folks have and are happy and satisfied with,  why then, are Senator Adam Kline and others continuing down this path?  Are they too proud to admit they may have made a mistake?  They say they care about our citizens, they say they are concerned about those without any services.  Their actions do not support what they say.

It is really time to eat that pride and stop this process before more people are hurt and more people lose services or go into crisis.   It’s not too late for most.

Unfortunately, it is too late for those 21 and under.  

Our state has taken away a life-saving choice for our children which some of you may need in the future.  Regardless of what is happening now with your child, there may come a time in your child’s life in which you may need to consider out of home placement for his/her safety and health.  This is not an easy choice to make at any time but sometimes it’s the best choice.

Right now there are several children 21 and under who have stabilized in the Residential Habilitation Center  (RHC)because they now have the support they require to stay safe.  These families have requested admission but our state is denying them admission to this life sustaining support system only for the fact that they are under 21.  There are no alternatives for these families and they now have to fight and hire lawyers so that their children may remain safe.  DSHS continues to deny admission.

Please, for the sake of all, write to your legislator, the DD Service System Task Force (address below) and ask them to repeal SSB5459 which prohibited those under 21 from accessing these services.  Also, write to tell them that you support a continuum of care which includes the RHC – regardless if you ever think that you will need it – because it is the safety net for all of us.

As a parent, being told that there is no place in our community which can care for your child and for you to call the police if there is a crisis is not something that any parent, particularly a parent of a young teen with a developmental disability, wants to hear – yet this is happening and has been happening because our state has taken away the freedom of choice as guaranteed in the US DD Act and the US Supreme Court Decision of Olmstead.

We need to preserve these choices so that all people can have a safe environment in which to live.  Even if this is not the choice that you would make, it is a choice that many families do make because they know it is the least restrictive environment for their child and a community in which their child can be safe, supported and participate in life to their fullest.

 

You can write to the DD Service System Task Force via Brittany Yunker – her email is Brittany.Yunker@leg.wa.gov

 

Or visit the Website for the Task Force at:

http://www.leg.wa.gov/JointCommittees/DDSSTF/Pages/default.aspx

Is our state allowing clinical trials on our most vulnerable citizens without an ethical review?

Human Subjects Research being done on our most vulnerable citizens with no consent or ethical review.

Senator Adam Kline is proposing legislation, again, which is an experiment on our most vulnerable citizens.  Why are we allowing this happen right under our noses and why aren’t more people calling him and others out on this unethical practice?

The year 2011 saw passage of a bill which legislated age discrimination in violation of the US DD Act and the US Supreme Court Decision Olmstead by not allowing those 21 and under to receive the life saving and life sustaining services in the Residential habilitation Center (RHC).  This bill also called for the closure of one of our state’s RHCs and froze admissions to another one.  There was one negligent death just one year ago of an individual who was evicted from his  RHC home into his “own” community home.  He suffered needlessly due to incompetent and untrained caregivers before dying from swallowing laundry detergent which had been stored on the counter in a milk carton.

Now, Senator Kline is again pushing our DD Service System Task force to run more experiments our most vulnerable.  He is advocating for closure of another RHC (he states 360 people – which is the number of people who reside at Rainier School) in the quote below transcribed from the Task Force meeting on October 9, 2012.

“You’ve got some number of families – of those 360,  would want to have their loved on in a RHC, receiving the kind of care that they have and their choice is in “hither or yon” or in the community.  The whole point of sub F (part of legislation that Senator Kline is trying to get passed)– take a look at it – is to guarantee as best we can – that the treatments – we spell it out – medical, nursing, dental, behavioral, mental, habilitation, employment, day support, that those, that the degree of applicability in the RHC is met in the community above and beyond what the residential provider provides.

So, the point is there may be some people, there will be some people for whom, a small number, for whom it will be more expensive to provide a vast needed bundle of services and supports in the community more expensive than it would be in the RHC.  I get that – for a small number of people and we’ll do it because for the much larger number of people, the same or better services can be provided at less cost and we can eat into that 13,000 waiting list.  Okay, there is an equity involved here, alright? ”

October 9, 2012

Developmental Disabilities Service System Task Force

Olympia, WA

My questions:

Given that Senator Kline is clearly talking about closing an RHC and  he clearly states that community services will be more expensive.  Yet, Senator Kline has idea what the number will be of those whose care will be more expensive in the community than in their current RHC home.  This means that he will have to have a threshold of who will receive appropriate care and who will receive negligent care .

1.  How many people will Senator Kline allow to have their assessed needed services in the community?  10%, 25%, 50% 75%?

2. What is the cut off for not having ones assessed needs met?

3. What happens to those who then fall on the other side of that cut off?

4. Do we accept negligent care for them because their care is now too expensive?

Why would anyone consider moving people who are happy in their homes, not requesting to move and have their assessed services met in a cost effective system to an untested and most likely more expensive system?

Isn’t this illogical and unethical?  Well, this is exactly what Senator Adam Kline and others who are pushing for – an  expensive and experimental system change.  Where are the ethicists in this experiment?

Look at the  Code of  Federal Regulations  and ask about the protection of human subjects.  Why are our legislator allowed to play experiments on our loved ones without an ethical review team looking into this.

Is our state allowing clinical trials on our most vulnerable citizens without an ethical review?

Please look at the Nuremberg Code, the Helsinki Agreement and the Belmont Report (A Guide to Research Ethics, 2003) below and tell me why these experiments are even being talking about without going through an ethical review.

The Nuremberg Code has 10 guidelines:

1. Research participants must voluntarily consent to research participation

2. Research aims should contribute to the good of society

3. Research must be based on sound theory and prior animal testing

4. Research must avoid unnecessary physical and mental suffering

5. No research projects can go forward where serious injury and/or death are potential outcomes

6. The degree  of risk taken with research participants cannot exceed anticipated benefits of results

7. Proper environment and protection for participants is necessary

8. Experiments can be conducted only by scientifically qualified persons

9. Human subjects must be allowed to discontinue their participation at any time

10. Scientists must be prepared to terminate the experiment if there  is cause to believe that continuation will be harmful or result in injury or death

Helsinki Agreement

•  The necessity of using an independent investigator to review potential research projects

•  Employing a medically qualified person to supervise the research and assume responsibility for the health and welfare of human subjects

•  The importance of preserving the accuracy of research results

•  Suggestions on how to obtain informed consent from research participants

•  Rules concerning research with children and mentally incompetent persons

•  Evaluating and using experimental treatments on patients

•  The importance of determining which medical situations and conditions are  appropriate and safe for research

The Belmont Report outlines:

1. The ethical principles for research with human subjects

2. Boundaries between medical practice and research

3. The concepts of respect for persons, beneficence, and justice

4.  Applications of these principles in informed consent (respect for persons), assessing risks and benefits (beneficence), and subject selection (justice)

DD Service System Task Farce

So far I have learned that the task farce is not interested in facts – they refuse to look at real data or question the same recycled and inaccurate data which has been used over and over again for years – the very same data which has escalated the care crisis for our citizens with developmental disabilities.  Below are some of my observations:

  • There is no concern for escalating costs for programs which are new and untested which will serve less than 6 clients a year.
  • There is no awareness that the cost for high support needs clients in the community is much higher than the cost for a similar person in the Residential Habilitation Center (RHC).  Yes, we all know that there are many which very high support needs who live successfully in the community – but their costs are also high.  Lance Morehouse, Outreach and Advocacy Coordinator for King County Parent Coalition stated during one Task Farce meeting that his son lived at home for 17 years with the help of 19 hours a day of licensed nursing care without blinking an eye with regards to stating how he cares about all those without any services.   Am I missing something here?  How can one proudly state that they used that many service dollars (certainly much more than the daily cost for a client in the RHC) and then complain that the clients in the RHC (who gladly share services) are taking more than their fair share – doesn’t make sense to me.
  • There is no awareness that sharing services saves money
  • There is no awareness that people have a choice as to what the least restrictive environment for them is
  • There is no adherence to Olmstead with regards to choice, least restrictive environment or cost to the state.
  • It is not a concern that there is a huge lack of oversight in community residential settings
  • Even though our state has space and capability to provide services on the RHC campuses for those in community settings, the fact that it may take some” work to figure out an accounting system” seems daunting – yet on the other hand DDD has worked on building a program from the ground up with many unseen problems with a seemingly  limitless budget to service just a handful of clients.  This program will be experimental.  Is this a less costly and less labor intensive project than figuring out an accounting system?
  • Senator Adam Kline pushed his bill through the legislature based on inaccurate data and prematurely closed off services to our youth – yet he states he cares?   How can that be?

 

I realize that those in the driving seat will do whatever they want with little regard for facts or human lives at stake.  I find these actions negligent and inhumane.  Do they even care about the harm they are doing?

In order to change the name from DD Task Farce to DD Task Force, this group will have to look at accurate data.  I wonder if that will happen?

As many of you know we are in the midst of our DD Service System Task Force (or should I say Farce?)

19 hours a day

Lance Morehouse, Outreach and Advocacy Coordinator from The Arc of King County Parent Coalition for Developmental Disabilities, stated the following on September 25, 2012  as a member of the Developmental Disabilities Service System Task Force in Washington State. 

 

Lance (From The Arc of King County):”The comment about people who are more complicated or more profound being served by the RHC, I’d just like to ask Don really quick,  I think the data that I’ve seen has shown that the majority of the people ,Lance, Jr. had 19 hours a day of nursing care in our home and he lived in, it wasn’t an RHC but a children s  home in Spokane for the first year and a  half after he passed away and my experience was he almost passed away before we were able to bring him home but he lived another 17 years in our home with the nursing care, but isn’t there data that shows some of the people with the most intensive health care needs are living at home with their families?

Don (From DSHS):  “That is accurate.”

 

My questions and comments are:

1.  No one has said that those with significant disabilities and high support needs cannot live in a community residential setting.  

2.  Did anyone hear what Lance said?  His son had 19 hours of licensed nursing care in their home for 17 years.  Has anyone wondered what our state paid for that care?  

3.  Lance is quick to point out that the care in the RHC is expensive and that there are many in the community with no services.  

4.  How can one talk about the personalized care in an individual’s home and stating that we need to have more people utilize this expensive care (when those same people are content to share services in the RHC at a lesser cost to our state) and then go on to talk about all those with no services and that the people in the RHC are taking more than “their fair share”  

5.  Are not these issues logically opposite?  

6.  What happened to the concept of sharing services for the better good of all?  This is exactly what those who choose to live in congregate care are doing.  They are saving money and resources by sharing with others.  Why is this so wrong?  

 

 

Respite Revamp

I have hope.  Hope that this DD Task Force will be able to accomplish something that the previous 38 or so before were not able to accomplish – namely revamp the system so that there are services for those in need before they get to the crisis state.

We need to think of new ideas that will serve our community members and stop blaming others for taking “more than their share.”  In order to do this though, we need to allow people to have their voices and concerns heard – even if they do not agree with our opinions.  We cannot shut out people who have something new or different to offer.  We need to stop the rhetoric.  I think we can do this.

As an advocate for a continuum of care, I do not advocate for one type of care over another but advocate that each person is seen as an individual and they are supported according to their needs.  That’s what I care about and in order to achieve that, we need a continuum of care services.

In thinking of innovative ways to better serve those in the community, I have come up with the “Respite Revamp” model.  I have introduced this previously but have just written to the DD Task Force today with the explanation of why a respite system like this will work better than the current system.  I believe that if more people had stable, reliable and sustainable respite, we would not see as much crisis oriented care.

Below is my letter to the DD Task Force  – I hope that this idea is considered.

September 8, 2012

Dear DD Task Force,

As a parent who has survived crisis I would like to give you an idea of a program which I believe would be greatly beneficial to those in the community.  This type of program would help families and alleviate some of the crisis situations by providing a service in a new way.  I refer to this as “Respite Revamp” and I believe that it will not only serve families better but would be a more cost effective system for DDD with respite service.

The problem is lack of availability and lack of consistency with in-home respite providers.  Our family and many others who utilized these services (may include Medicaid Personal Care providers too) have experienced similar problems. Many times the provider did not show up when scheduled, would show up but be physically or emotionally unable to do the job, not available on a consistent time or schedule and basically not reliable.

I will describe our situation but our situation is not unique.  Our family was lucky in that I was able to work part time as a registered nurse in the evening shift and my husband, who is a professor, was able to be flexible enough with his schedule so that there was always one of us available to care for our son.  This worked great until our son started Middle School and he got home from school before my husband could get home from work.  This is when we started to have many problems with the caregiver – be it Medicaid personal care or respite – they were the same people in our minds.

Given the low pay of these providers many have two jobs.  Many of these caregivers also work in the school districts.  This issue was a huge problem for us since the time we needed care was right after school and few caregivers were available.  This necessitated me even decreasing my work hours more so that our son could be cared for.

Caregivers calling in sick or late at the last minute caused more problems that I can think about.  We would schedule our lives around the times that we had a caregiver.  This meant doctor’s appointments, events with our other children and work.  When a caregiver did not show up it would cause havoc in our lives.   Not only would our son be traumatized by this which necessitated us working through his behavior issues due to change of schedules but caused many problems with the hospital where I worked (hospitals – particularly critical care areas with specialty nurses such as the unit I worked on– do not appreciate last minute calls from staff saying they cannot work that shift), last minute cancellations of important appointments and missed opportunities for us to participate in events of our other children.

This was not only a problem with independent providers but with agencies too.  When working with an agency which was supposed to ensure our son had consistency in caregivers, they would only schedule one week at a time (how does one then plan other appointments when they could not schedule more than a week out) and then they started sending caregivers who had not been oriented to our son without giving us prior notice.  When this occurred, there was no way that I could leave to go to work or the appointment that I needed to attend since it would not be safe to leave them here.

The most reliable and best service that was the most beneficial to us were programs that Seattle Parks and Recreation Specialized programs held.  These were programs were reliable, planned and the staff was consistent.  With group settings and programs that had staff backup, the stable, sustainable respite we received was lifesaving.  What was even better though was that our son was able to attend many community events which we could have never taken him too.  With this program we could plan events with our other children and know that Thomas would be cared for safely.  I cannot speak highly enough of this program – both the Saturday Activities Program and the Day Camp Program.

It is from thinking about this program that I believe the “Respite Revamp” may work.  If DDD could run some consistent day or evening programs in community centers rather than rely only on independent caregivers in homes, many more could benefit from this type of respite.

If there was group respite, the providers could be paid higher wages which hopefully would also help with stable, sustainable staff and consistency.  There would be staff back up so one person calling in sick would not cause the respite to be cancelled.  Families could plan around this time and feel it would be reliable.  This may be just enough to alleviate many crisis situations.

I truly believe that if a program such as this had been in place when my son was in Middle School and High School, our lives would have not been crisis driven, our son would still be at home and I would not have a permanent disability.  It’s too late for our family but it’s not too late for others who could greatly benefit from a program such as this.

Please consider programs such as this in thinking about systems to maximize the services we have and to reach those without services.  This would be a very cost effective and beneficial service.

Thank you,

Cheryl Felak, RN, BSN

Seattle, WA

Respite Revamp