Tag Archives: RHC

Homecoming Royalty!

Thomas was chosen by the student body at Shorecrest High School in Shoreline to be part of the Homecoming Royal Court this year.   He is certainly far from being isolated and restricted –

he has flourished from being allowed to grow and learn in the environment which is the least restrictive for him.

When RHC residents move to a community setting, many will need an increase in direct support staff due to the more restrictive environment for them, which will also increase the cost of care.

Moving my son and many others with similar needs from the RHC to a community setting is far from “doing the right thing” and will actually bring restrictions and harm.   “Doing the right  thing” means adhering to the US DD Act and the US Supreme Court Decision Olmstead -


not evicting people from their homes because you don’t like where they live. 

Please continue to allow our loved ones to thrive

in the environment which is the least restrictive

 for them!

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

Fircrest Family and Friends

For those interested, we now have a Fircrest Family and Friends Google Group (fircrestfamily@googlegroups.com)

 

This is an informal group for families and friends of residents at Fircrest School. We are building a “natural supports” network in hopes of communicating with each other and sharing experiences, hopes and dreams. We work to bridge the divide and build a continuum of care service model.  Fircrest is a Residential Habilitation Center in Shoreline, WA (RHC) and is a campus community for our most vulnerable citizens.

There will be a bi-weekly newsletter published by families and friends to update us on what people are doing, inform us of changes on campus and also local community events.  We have already started some of these projects and during the summer we will be instituting a couple more programs.

 

NO Safety Net? It’s a possibility unless we make our voices heard!

We need a supportive coalition to prevent future cuts to our most vulnerable citizens. Our Governor and legislators need to hear from us, the people. We are the ones living the experience of crisis after crisis with a bare bones safety net. What happens when there is NO safety net?

Please uphold our 1999 US Supreme Court Decision Olmstead and the US DD Act by supporting a continuum of care service model. You can sign this petition to pass the message on to our Governor, Governor-to-be and legislators. We need to uphold our own State Constitution, Article 13 which states institutions need to be fostered and supported by the state.

The citizens of our state did win a major battle in the McCleary v State lawsuit.  This looks at the same part of the Washington State Constitution which we look at for care of our most vulnerable who need the high intense supports provided at our Residential Habilitation Centers (RHCs) to maintain their health and safety.  The issue is that there was a lawsuit to provide funding for education and there has not been a lawsuit against our state to “foster and support” the care of those in the RHC.  (I’m not advocating for a lawsuit – only for our State to do what is right and just and as is outlined in our Constitution)

Our state has no new revenue sources to fund the education which needs to be provided.  Without a source of revenue – what do you think will happen?  My guess is that our legislators and Governor will again look at our most vulnerable and again pull away their life sustaining support.  We can not let this happen.  We need to find other places which have at least a morsel of meat on the bones or provide a revenue source.

http://www.thepetitionsite.com/853/982/813/i-support-a-continuum-of-care-service-model/?cid=FB_Share

We are Survivors – Please Support HB 2581

Please support HB 2581

 

We are survivors!

 

Much like the camaraderie people develop after living through harrowing experiences, families of Intermediate Care Facilities for People with Intellectual Disabilities ( ICF/ID)  residents also develop a bond through similar life experiences.  These families have survived crises much on their own, isolated from the mainstream life, many times holding the life of their child or sibling in their hands.

 

Only through the life sustaining and life enriching relationships and services which the residents experience in the ICF/ID, their families have finally found others who live in their same community.  Many of these families have developed camaraderie from having similar life experiences of surviving crisis after crisis.  These families know that the life of their loved ones is only supported by the community at the ICF/ID.

 

In these times of self-advocacy, person centered care and personal choice, why are some people saying that they know better than the very people who have survived?  These residents and families know how close they have come to life’s perils and have chosen to live in the ICF/ID community.  No one is forced to live there but there are many who are not able to make this choice to live there due to the ideology of those who “know better.”

 

It has been proven over and over again that the cost of these residents with their intense and complex support needs are higher than the “average” person with an intellectual disability.    Their care is expensive no matter where they choose to live but their care can be better managed in a safe, quality and cost effective manner when they choose to live in a similar community and utilize the same services.  Moving these residents will not minimize their support needs – moving them risks their lives, relationships and community ties.

 

Please allow these residents the same rights and choices as all others in our society.

 

This is for Tommy – We Care!

I AM BIASED

Yes, in answer to those who accuse me of many horrible things  - I am biased - biased towards safe, quatlity and cost effective care for our citizens with Intellectual Disabilties.  What I find funny in an ironic way is that some of these people accuse me of the exact opposite of what I am doing.  I often wonder where they are getting their information or where they learned their math and logic because they just don’t make sense.

I do not think that people or systems are prepared to care for people with the highest support needs.

I feel like a broken record in trying to communicate and break down walls of those who have been led down the wrong path by brainwashing.  If people would stop, listen and think, I believe that we could come up with a system that really does support a continuum of care – a system which best serves each individual with their assessed support needs in a safe, quality and cost effective manner.  I’m afraid to say though that until the propaganda is questioned enough and people begin to hear other opinions and issues, it may be long haul for us.

I only hope that no more innocent people will lose their lives while we are trying to figure it out.

Cost of Care by Support Needs, nursing and some medical care included

DD EMIS Data for Home and Community Based Service Waivers

 

 

 

The Almighty Dollar more important than peoples’ lives?

Below are excerpts from letters that I have received by those who make profits from residential services.  I understand the attacks against me since he views the accurate data being presented from original sources as a threat to his livelihood. 

What I would really like him to consider is the threat to the lives of those less able them him who will have all funding and resources cut if this data is not looked at accurately.  He is refusing to do that but instead throws arrows at me by saying the data is  manipulated.  The data is presented exactly how DDD records it in their records, how the agencies themselves report it to DDD and how the agencies themselves report to the IRS – hardly manipulated on my end. 

This CEO has clearly not read the reports nor is he aware that most of my research is geared toward improving the quality and safety of  care to those who do not reside in the RHC and to also bolster services and resources to people in the community at large.  His fear and anxiety about true data being exposed is clearly evident in his attacks.  It’s interesting that he does not counter-present with facts that would indicate what I have is incorrect  – I assume that is because those “facts” are non-existent. 

“I will not be communicating with you in the future as it is obvious that you are unable and/or unwilling to support community services, which is evidenced by your focus on presenting deliberately misleading data to state personnel and legislators.

Your lack of knowledge and understanding of services and funding is glaringly apparent in one report that you posted in which you claim that the “Cost correct for Resident Acuity” is over $850 per person for the Arc of King County, while you list the RHC costs at or below $200.  I fully understand that you are the parent of a person that resides within an RHC, and that you believe you are advocating for all people who experience an intellectual or developmental disability to have access to a continuum of care.  However, your approach plays as one-sided, is immensely inaccurate, slants towards de-valuing community residential services, and does notsupport a continuum of care.

Your continued efforts on a daily basis to distort the truth and inflate the data to present community services as more expensive sends the erroneous and destructive message to decision-makers that services can be further cut.  You are playing a dangerous role in your efforts and as such, I ask if you are even aware that your efforts will lead to further erosion of community services for people with developmental disabilities and will have grave and serious impacts upon those individuals who currently live independently in the community with community residential supports?

With regard to the data you present, I wanted to make some corrections.  It is important to correct these inaccurate figures since one of the reasons that we continue to face cuts is because individuals and organizations present data that has been either incorrectly calculated or misrepresented to somehow convey that community programs are more expensive, therefore being overfunded.  By presenting reports that state community programs are expensive, it sends the message to legislators that we should be cut.  This is part of the reason why we are in this crisis. 

Alpha Supported Living Services’ costs, on average, are above the average because 1) we are located in King County, which has the highest cost of living and therefore highest benchmark funding, and 2) we serve some more challenging individuals so our costs are higher than the average acuity level.  For example, over 40% of the individuals supported by our agency formerly lived in an RHC, 33% have a diagnosis of Autism, and approximately 40% have an accompanying mental health diagnosis.  As such, our costs are higher than the average due to acuity levels. ”

This last point regarding costs are higher for higher acuity is one example that I have been trying to communicate – it is good to see that he recognizes that fact here but when speaking to legislators and the public, that would not be addressed.  As an example the attached graph indicates the cost of care as reported by each agency with respect to their reported “Average Hours per Day for Resident Care” – a measure that indirectly looks at client acuity.

Cost of Care chart with hours per day as reported by each Supported Living Agency

It is interesting to be aware that the average cost of care reported by DDD is $6400.00 a month.  This average cost is equal to about 11 hours per day.  On this chart, the highest reporting agency had 21.65 hours at $10,816 per month and the highest cost agency reported 18.22 hours per day at $15,620 per day. 

Another VERY critical issue is that these reported costs DO NOT include medical, dental, nursing, psychiatry, prescription medication, therapies, education, vocational training, habilitation, FOOD and RENT. 

My message as an advocate for a continuum of care is that these residents with high support needs are EXPENSIVE to care for no matter where they live.  It is more cost effective, safe and less restrictive for many of them to live in the RHC.  These are the FACTS – no manipulation, no inflation, only the facts. 

This is the information which needs to be shared and understood – when people try to cut corners and under-report, people die.  We have seen this happen already this past year. 

The Stand Opinion

DRW Validates Concerns regarding Safe and Quality care in the community for RHC residents

 

Mark Stroh, Executive Director of Disability Rights Washington (DRW) has written a letter to Governor Gregoire protesting her veto of Sections 7 and 11 of SSB 5459.  Even though DRW supported SSB5459, I am pleased to see their concern regarding the Governor’s veto of these two critical sections which were put in to assure safe and quality care for our residents. 

 

Without these two sections, there are no commitments to ongoing services, continued safeguards, quality assurance and independent oversight for the health and safety of our residents. 

 

Thank you to Disability Rights Washington for validating the concerns that we, as grassroots advocates for a continuum of care for our citizens, have been highlighting in our statements to the public and our legislators.