Category Archives: The Arc Chapters

The “unserved” – King County Legislative Forum

The Arc of King County and King County Developmental Disabilities Council hosted the recent Developmental Disabilities Legislative Forum.  The theme of the evening was “The Unserved.”    Yes, this is a huge issue but an even larger issue was the blatant discrimination against our most vulnerable citizens by The Arc of King County and Lance Morehouse, Outreach Coordinator and Advocacy Coordinator King County Parent Coalition, The Arc of King County.

Morehouse refused to allow two groups to speak at the forum stating there were time limits and a change of focus of the forum.  Make no mistake about this – these groups do serve the” unserved” and that is part of their focus but they were denied a chance to speak due to their advocacy for a continuum of care.  The Arc is opposed to any congregate care and therefore discriminates against those for whom this care is the LEAST RESTRICTIVE,  safest and cost effective care for those who chose this type of care.

The Arc of King County receives thousands of county and state public dollars every year for outreach and advocacy, parent training, parent to parent, and many other services.  The Arc uses some of these public funds to discriminate against our most vulnerable, censor information from advocates for a full continuum of care and block information which may be life-saving to some people with DD or their families.

It is time to question these practices which are paid for with public funds.

Below is a link to the letter which I wrote to members of the King County Council and legislators from King County.  I do hope that this issue will be taken seriously and these decision makers become aware of the publicly funded discrimination against our most vulnerable and their advocates.

Letter regarding King County and State dollars to The Arc of King County

Letter from Friends of Fircrest to Legislators regarding their exclusion from the DD King County Forum

Letter from Shoreline Community Lifelong Learning PTSA President regarding denial to inform legislators of this new community group

King County Developmental Disabilities and public funds to The Arc of King County

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?  

 

 

Doesn’t My Voice count? Let me decide what my community is!

My son Thomas lives in his chosen community. Living in his community enables him to engage in one of the few activities that he can do independently.    Using his savant memory for people’s names together with  his naturally exuberant personality and insatiable desire for talking with people, he greats every person he sees by name and calls out “hi (whoever he sees)” at the top of his lungs and jumps with joy whenever he sees someone coming or in the distance.  If he doesn’t know your name, you will be greeted with “what your name?” and “what country are you from?”  Don’t be fooled though – he will never forget!

Thomas lives at a Residential Habilitation Center (RHC) or Intermediate Care Facility for People with Intellectual Disabilities (ICF/ID or ICF/DD).  This is a campus community and one which suits him perfectly.

Below are some photos from his community:

Thomas’ Secret Garden – growing sunflowers and pumpkins here

Therapy Garden – Raised Beds – Thomas is growing herbs in his bed. He waters and tends to his plants here.

Open field next to the Healing Garden

FIrcrest Chapel nestled in the woods

Community members playing in the open field

Fircrest Healing Garden with wind chimes

Thomas running to the concert – excited about seeing Cowboy Buck and Elizabeth!

Below are some photos of some group homes in Seattle.  Group homes are wonderful for those whom the environment is appropriate but just because it is a group home does not mean that it is the least restrictive environment or a community.

Nice, well-kept group home but certainly not “community” or “least restrictive”

Another well-kept group home but is this “community?”

Community Home on busy arterial without fencing. Is this a safe community setting for a person who elopes?

 Please see this link for other issues with high traffic and group homes:  

Community Homes in High Traffic areas

I fully support a continuum of care and small, community group homes when that is the appropriate setting and truly the least restrictive environment for the individual.  What I am trying to illustrate here is the fact that just because a group home is situated in  a “neighborhood” does not mean that it is less restrictive, more community oriented or more appropriate for the person.  One needs to look at the individual and as both the US DD Act and the 1999 US Supreme Court Decision Olmstead state, the individual together with their family/guardian should be able to make the CHOICE.

Prove Me Wrong

Being fairly new to advocacy work, I imagine that I started to ask questions that had not been asked by those who have been around for awhile.   There have been many assumptions that have been looked at as facts and from what I can tell NO ONE has questioned the Division of Developmental Disabilities  (DDD) and The Department of Social and Health Services (DSHS)  regarding the accuracy and completeness of the reports and data that they give for advocates and legislators to work with.

Given the data that has been available, (which as been incomplete and inaccurate when compared to original sources) many poor decisions have been made.  I really do not understand why an agency that is granted the responsiblity to protect our most vulnerable is utilizing inaccurate information which will be used for policies which would then cause harm to that very population.  Can someone explain this to me?

Also,  when I have contacted many of the advocacy groups about this I have only heard that they only take the information that is given to them and assume it is correct without checking into the actual data.  Why wouldn’t anyone question where the data came from?

Most recently I have applied to join the Community Advocacy Coalition,  (CAC) a coalition made up of organizations which advocate for our citizens with developmental disabilities.  Scott Livengood, chair of this coalition informed me the of the admission criteria:

1. Be a organization with a 501 c(3) status, a licensed business or a public organization, and

2.  Sign the Letter of Agreement and support the Core Values

The admission form and Core Value statement are all very good with the exception of the last paragraph.  I filled it all out and wrote to Mr. Livengood that I was an advocate for a continuum of care and that as a business owner and advocate I could not sign the agreement as it was but offered my edits to which I could fully agree.  He wrote that he would take it to the membership  to discuss and get back to me.

Today I heard that my membership was denied.  I’m not surprised because I am aware that the CAC really does not live up to it’s own core values and that a large percentage of the member “organizations” do not meet the criteria in #1 above.   In addition, from being able to attend one meeting and reading minutes from other meetings it is clear the motive of the CAC is to close congregate care facilities to promote profits to the vendors.

I had offered to make a presentation to CAC with information regarding the data which I have researched  would be fully prepared to defend the information.  They did not take me up on the offer.  From the denial of my admission and lack of interest in having a presentation regarding critical information which they are lacking, I have come to the conclusion that the purpose of the CAC is to consolidate and close congregate care, deny services to those who need the high support need services that would be available to them in a continuum of care model and to accept negligence and crisis as the standard of care for our citizens with intellectual disabilities.

This is totally unacceptable and particularly so when CAC states values such as:

“Nothing about us without us”

“Provides a platform for advocacy organizations to share information, educate one another on issues of mutual concern “

“Our many voices join in unison for one common vision”

That is fine that they will not accept the letter of agreement with the edits which I provided but then to not even take me up on the offer to share information, educate the group on missing data and give them the chance to ask me questions and to hear the defense of the data is further denial of information to those who critically need it in order to make informed decisions.  These actions do not uphold their core values at all.

Again, I am not surprised by the denial of admission since it is the consistent with the censorship against the information which I try to share and the banning of comments and postings from me on any of the sites which are part of The Arc monopoly on DD advocacy.  It is due to this monopoly that more thorough and accurate data and information is not known since the monopoly will not allow it to be publicized and distributed.  This is a very sad state of affairs and one which only adds to the crisis that they supposedly state they are trying to correct.

Without accurate data the crisis will continue to escalate and those who support a continuum of care will continue to be the scapegoat for this while the vendors make profits = profits that could very well be used to provide more services and supports to those in critical need.

 

 

Developmental Disabilities Council, Disability Rights Washington and The Arc – Pay attention to the new coalitions

I am buoyed by the increasing number of citizens who are reaching out and contacting me regarding the issues of caring for our loved ones with intellectual disabilities.  Many of us who care for those with more profound disabilities or those with higher support needs are quite frequently left out of the discussions, left out of stakeholder meetings, left out of decision making processes that affect us.

Why?  Because the above mentioned agencies and those who are connected with them do not follow the federal law and guidelines as outlined in the US DD Act or the 1999 US Supreme Court Decision Olmstead.  But with increasing opportunities for those in the community to speak out about their needs and to be adequately informed of issues and participate in decision making processes that affect them, the above agencies will have to start listening to those who they supposedly advocate for.

Not once has anyone from the above agencies proven me wrong with the data I have presented.  Not once has a person looked at it and questioned me about it.  Until I am proven wrong through investigations and discussions, I believe I am on the right track.  I believe that because rather than being proven wrong with facts, executives and employees of the above agencies have only attacked me personally – no facts, no data  - only personal assaults which are unrelated to the facts that I have shared.

With new coalitions forming outside the Arc monopoly, I believe advocates for people with intellectual disabilities will start to look different.  Rather than attacking one segment of the population and using them as scapegoats for the crisis, we will be looking at a continuum of care model and looking at how best to serve ALL people with intellectual disabilities in a safe and quality driven, cost effective manner which is accountable to the public.

 

So far this has not happened.

 

 

Autistic Man walks away from drunk caretaker

This story exemplifies some of my worst fears.

Answers sought after autistic man walks away from drunk caretaker.

I hate to take advantage of situations which have caused harm to others but in this case, I must point out that this is the very issue which I am trying to advocate against.  I have been trying to have the so-called DD Advocates (The Arc, Disability Rights Washington, the Washington State Developmental Disabilities Council, the Community Residential Service Associates and others) look at the facts more accurately.  They refuse.  Maybe more stories such as this will help open their eyes to what they are really advocating for with regards to our most vulnerable citizens with the highest support needs.  They are not advocating for safe, quality, cost effective care but for substandard and negligent care.  Rather than advocating for the vendors, it is time they really advocated for our citizens in need.

Here is my post to the KOMO News story:

As a healthcare provider, parent of a child with intense support needs and advocate for our most vulnerable citizens, this story more than sickens me. I am appalled at the care, lack of oversight and more that is reported in this story and am so thankful that this man was found and will hopefully now be cared for in a caring, safe, healthy and humane environment for him.

I’m so afraid that we will hear more and more about abuses such as this one. The Arc, Disability Rights Washington and even the Washington State Developmental Disabilities Council all oppose any type of congregate care for our most vulnerable citizens – stating that all citizens can be safely cared for in community settings for less cost. The only way to have it cost less than a congregate care community is to endorse negligent care such as this type of care.

With staffing turnover rates of up to 45% in these community settings, there is no stability or sustainability and I wonder about the level of training and lack of back up support for the staff and residents. To me, this situation is a time bomb ready to go off at any moment.

This is so unfortunate since the so-called DD advocates will not address the facts about support care levels and safe care. They support the vendors, such as Service Alternatives rather than our loved ones.

I support a continuum of care model – a model which is based on the assessed needs and choices of the person and their family/guardian. This model includes the Residential Habilitation Center (Fircrest, Yakima Valley School, Rainier School and Lakeland Village) through independent homes. It is the safest and most cost effective model to best serve ALL our citizens with intellectual disabilities.

Much of the factual information has been shared with these so-called DD advocates and legislators – but they do not want to address the facts. I do hope that publicizing these tragedies will serve some good in knocking some sense into those who make the policies. Much of the research regarding the facts of the issues can be found at www.becausewecare1.com.

It is our duty as a society to safely care for our most vulnerable. Yes, this is a hard job, I know, I’ve been there and I am SO thankful for the care that our son is finally able to have at Fircrest. He loves his home there, he loves his school (Shorecrest) and he is active in his community. Yes, it’s not perfect but it’s the best we can do and it is the safest and least restrictive environment for him and many others.

I do know there are some excellent community homes with excellent caregivers.  We need to support our caregivers – they are the backbone which provide stability and sustainability.

Do you know what you advocate for?

As a parent who has survived a revolving door of crisis after crisis and of a child who was given a second chance at life by being allowed his right to admission into a Residential Habilitation Center, I write this letter with hopes and dreams but also with sadness.  If one person’s life is saved by this, it’s worth it and I do know that I become a broken record – but it is necessary to be heard.

When our child lived at home we had no other life but trying to keep him safe and healthy.  I was not able to attend any meetings or participate in  advocacy beyond trying to work with DDD to approve the “allowed” services and support on the waiver he was on.  After several years of fighting just to get him prescribed supplies (DDD denied them as ‘unnecessary”) I turned to The Arc.  The Arc was no support at all – I was told to call my legislator.  Well, as a parent in crisis, that recommendation seemed ridiculous (now I know different) but I think that someone from The Arc could have helped me – they had no interest in helping me or our son.

Up until then, I had assumed that The Arc and the other DD advocates really did have the best interest of those with Intellectual Disabilities (ID) in mind.  I now know differently.  I see the false advocacy and hidden agendas and mud slinging that is done in addition to the personal assaults and censorship that allowed.  This letter will name specific people  - a practice that I have realized that I need to do in order for them to have some accountability to our community.

Why aren’t these advocates held accountable to being responsible stewards of our public resources?  They are failing us.  It’s time that these folks answered questions and responded to inquiries, rather then writing personal attacks to and about the person who asks the questions.  I would gladly discuss the issues with them or answer their questions about the research I have done or the data I have collected – they are not interested in even looking at though.

Mark Stroh – Executive Director of Disability Right Washington 

Scott Livengood – CEO of Alpha Supported Living and Legislative Committee Co-Chair of Community Residential Service Association

Sylvia Fuerstenburg - Executive Director, The Arc of King County

Senator Adam Kline

Developmental Disabilities Council

Please ask these people to:

1.  Read the US DD Act

2.  Read the 1999 US Supreme Court Decision Olmstead

3.  Review the data regarding cost of care for people with high care support needs. (http://becausewecare1.com/2012/06/11/will-negligence-become-the-new-standard-of-care/)

4.  Defend the research in the Report entitled “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” – also, if you know anyone who does any research, have them take a look at this and see if they can defend the author’s findings.  Let me know what you find out.

5. Ask them if they understand the significance of the Support Intensity Scale and the DD Assessment which looks at activities of daily living. (http://becausewecare1.com/2012/06/09/to-the-arc-and-other-community-advocates-for-people-with-intellectual-disabilities/)

6.  Have them review the non profits and financial statements which work with ID clients in our state

7.  Have them look at the issues of, lack of stability and sustainability of our caregivers, which directly affects the health and safety of our loved ones. (http://becausewecare1.com/2012/06/14/how-can-we-have-stability-and-sustainability-with-up-to-45-staffing-turnover/)

I’m not interested in hearing the same rhetoric from The Arc Advocates and their constituents – that information is inaccurate and misleading.  I’m interested in speaking with those who actually would like to know what the data means, where it came from and what it represents.  Those in The Arc do not know this information.  DRW does not know this information. Community Residential Service Association does not know this information.

 It has been shared with all of these organizations but they will not acknowledge the information because it does not support their agenda.

I can say that I have appreciated conversations which I have had with Sue Elliott, Executive Director of The Arc of Washington.  She has been candid and has indicated that yes, I am correct in stating that for those with high support needs the cost of care would be more expensive in community settings.  The Arc, though, believes that no one should live in any congregate care and that is what they advocate for.  It is fine to advocate for no congregate care but in so doing one also has to use accurate data and say that they do not agree with congregate care but it will cost more.  They are not doing that – they are giving false information to support their advocacy.  This is very detrimental to ALL with ID.

 

Please, I welcome questions and concerns.  I would appreciate feedback and will get back to you.  I have researched much of this data and have the public records and citations of all resources.

 

Please share with those who may need to know or understand this information or have them contact me.  I would be very happy help anyone understand the complexities of caring for a person with ID who has very high support needs.

 

 

Will Negligence become the new standard of care?

 

This chart illustrates the comparison of the cost of care for similar clients who have high support care needs of 24 hours/day.  By continuing to be misled by many who claim that they can better serve these residents in the community and at a lower cost, they have no data to support that claim.  The reason is because it is impossible.

To move these clients (who do not want to be moved anyhow) to a different environment assuming that thier care cost would go down is a form of abuse and neglect.  Is this a choice which you would choose for your loved one?  I would hope not.  It’s certainly not a choice that I will choose.

What is happening though is that we are not given the choice – this “choice” is being made for us and our loved ones by those who do not have a clue about how demanding it is to care for some of these residents.  They base their information on caring for those with much lower support care needs.

When taking a look at the chart below, you can see the average support care needs which each agency reports.  Why are the advocates who care for residents with much lower support care needs able to manipulate our legislators and citizens into believing that they also know what is best for and how best to care for our residents with the higher support care needs?  This is ludicrous.

 

 

It is time that the advocates who say they are advocating for those with developmental and intellectual disabilities not only listen to people who care for those with high support needs but also re-read the US DD Act and the 1999 US Supreme Court Decision of Olmstead to understand that by continuing on the path of advocacy which they are on does not only cause more crisis and loss of services, it does not uphold the decision of Olmstead or the US DD Act.

It’s time that the family members, community members and caregivers of those with the highest support needs are allowed to be included in Stakeholder discussions and decisions.  What happened to “nothing about us without us” – does it not apply to these folks?

 

2011 cost of care charts  Please read this report for data, citations and more information

To The Arc and other Community Advocates for people with Intellectual Disabilities

I am going to be presenting some very critical information.  I do not have a bias for community versus institutional settings for residents as many of you believe I do.  My bias is in the truth and reporting accurately what the reality of the situation is.  My bias is in upholding the US DD Act and upholding the 1999 US Supreme Court Decision of Olmstead.  I believe health and safety are paramount in the individual and their family/guardian’s choice in making the individual choice of what is best for that person.

Please read through the material, re-read Olmstead (or read it for the first time) and the US DD Act and then respond.  I will gladly answer all questions and I have documented all sources.  I welcome comments from people who have read the information or from those who would like more information.   Thank you.

This is why our community resources and our state run institutions are in such crisis – it’s because people are misguided and are using inaccurate and false information to base policies on.   In order for us to turn this crisis around, we need to start seeing things in a more realistic light.

The following quotes are taken from a “research” report authored by DSHS employees.  Read the quotes and then formulate an idea about the care levels for the residents in the 3 environments which were studied.  Then look at the authors’ conclusions and “Key Findings” and see if you agree with their assessments.

“Clients in RHCs had significantly higher support needs indicated for all SIS scales than clients in community residential programs and those supported in other community-based settings.”

“Clients in RHCs had significantly higher Behavioral Support and Medical Support need scores than clients in community residential programs and those receiving other community-based services.”

“Based on the interquartile ranges (25th-75th percentile, where half of each group’s scores lie), represented as a rectangle on each line in the chart below, and the medians (the midpoint of the distribution of scores, represented by the diamond shape inside each rectangle), support needs for RHC clients are typically higher on all scales, and clients residing in community-based settings have more diverse support needs for home living, health and safety, and social activity than clients in RHCs or community residential settings.”

“Clients in RHCs were more likely than those in community residential programs or clients receiving other community-based services to have high scores on all the DDD acuity scales presented below, except for seizure acuity. An extremely large percentage of clients living in RHCs have high acuity levels (and therefore elevated or urgent need) for protective supervision (95.3 percent) and interpersonal support (86.3 percent), and almost three fourths have high acuity levels for activities of daily living (73.6 percent).”

“Clients in RHCs were more likely than those in community residential or other community-based programs to have high acuity levels noted for behavior problems. Over one third have high behavioral acuity scores (40.6 percent). High behavioral acuity scores indicate that the most prominent problem behaviors for these clients are potentially dangerous or life threatening. Clients in RHCs were also more likely to have high medical and mobility acuity than those in the other two residence types, with over one third in RHCs having high medical acuity and one fourth of those in RHCs having high mobility acuity.”

“Clients residing in RHCs had significantly higher support needs than clients in community residential programs who, in turn, had higher needs than those residing in other community-based settings for activities in the following life areas: Home Living, Community Living, Lifelong Learning, Health and Safety, and Social Activities.”

“The more restrictive the setting, the greater the likelihood of having high medical support needs.”

“Our current findings suggest very clear differences in medical support needs, with those in RHCs being more likely to have high medical support needs than those in community residential programs, and those in community residential programs being more likely to have high medical support needs than those in other community-based settings. Specifically, clients served in RHC’s were more likely to have an exceptional medical support need than those in either of the community settings, and clients in community residential settings were more likely to have one than those in other community-based settings.”

“With updated data for long-term RHC residents, there is now a clear difference; with those in RHCs more likely to have a medical support needs score greater than five than those in community residential or other community-based settings.”

The quotes above are all taken from “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” by Barbara A. Lucenko, PhD and Lijian He, PhD.

“The purpose of this report is to examine the similarity of support needs among DDD clients living in the following three settings: 1) Residential Habilitation Centers (long-term residents of RHCs with recent full assessments of need), 2) community residential, and 3) DDD clients supported in other community-based settings.” (Lucenko, 2011) yet in the Key Findings the authors  DO NOT address the 3 areas but have arbitrarily combined the RHC and Community Residential into one group and Other Community into the second group.  By doing so, they have invalidated all the work of the study and have not addressed the purpose of the report.

This misleading report is what legislators were given to base their decisions on.  I urge anyone with any academic or research based background to look at this report and testify as to the validity of the authors conclusions.  This type of academic or research reporting would be thrown out of any “real” academic study so why does our legislature allow such shoddy work to guide policy?

Of the 7 areas assessed by DDD for Support needs (acuity), the average RHC resident scores HIGH in 3.61 of the areas, Community Residential in 2.05 and Other Community in 1.61.  This clearly indicates that the average RHC resident requires more support than the average Community Resident.

Residents with mutliple areas of HIGH Needs