Clarity!

 

I am making a proposal that Washington State should establish a “High Cost Review Committee” with representatives from Developmental Disabilities Administration,  Aging and Long Term Care Administration, Behavioral Health, and other representatives from various professional disciplines, community advocacy groups and families, that are critical to the care of this population.

Listening to the discussion that took place at the Joint Legislative Executive Committee on Aging and Disability (November 30, 2017) I was struck by the different approach to fiscal discussions for long term care settings compared to residential settings for people with intellectual and developmental disabilities.

I was impressed with the information shared.  The presenters were clear in the assessment of needs and costs and that those individuals with higher support needs have a higher cost of care.  They take this information into account when making decisions for aging clients and also those with dementia.  The presentation for Adult Family Homes indicated there are 17 different acuity levels for residents with correpsonding reimbursement rates.

One Senator asked for Clarity – clear ideas of the finances needed to try to meet the service need.  Without a clear idea of the cost they are unable to understand what is needed.

I question why this approach is not used when making fiscal decisions for residential care within the Developmental Disabilities Administration.  The data regarding acuity of care and costs is available to use but is not shared with those making budget decisions.  Without an understanding of the number of residents in each level of acuity (Levels 1-6), the legislators are not able to make an informed decision.

Last year I was accused by one state Senator  (Senator K.) of fabricating costs attributed to my son who lives in supported living when I shared those costs with another Senator (Senator C.).  All I did was forward the DDA documents I receive to Senator C- if there was fabrication it was not on my part.  Senator K stated that the data was irrelevant to the situation (cost of care of high support resident – seems very relevant to me)

Senator K wrote:  “Unfortunately the numbers you are using are misleading and imply that community care services are more expensive than RHC care.  Since the state pays for both, we have significant experience in many different clients and settings, the various elements of costs.  We have used averages for our proposals because that is the most accurate way to account for a group of clients and settings.  On average, community care is much less costly than RHC care.”

Using the AVERAGE cost of care is one reason that there is a crisis.  It obviosly does not work to use this average for the budget purpose of the cost of care for residents with high support needs.  Doing so will cause extreme underfunding of appropriate and mandated services.  Doing so is neglect.  My response to Senator K is linked here.

New Hampshire understands this fact about cost of care.  They realized that in order to provide effective community based services to all individuals with IDD- including those with significant medical, behavioral and psychiatric needs, they needed a collective of responsible parties – policy makers, agea agencies, service providers, families and communities to play a role.  The NH High cost Review Committee was formed in efforts to sustain and improve services for New Hampshire’s most vulnerable citizens.  This report from the High Cost Review Committee has critical information on providing appropriate and cost-effective services for this population.

The Human Services Research Institute (HSRI) compiled information regarding the percent of the waiver budget for states was used by the 5% most expensive residents.  This report was done in 2009 and they had hoped to update.  I inquired into an updated version and unfortunately one has not been produced.

In addition to asking for an updated report of the 5% most expensive service users, I shared my concern about using “average” cost of care with the polcy analyst.

” My concerns are that the “average” cost of all people with IDD is used when looking at what it would cost to move people out of the ICF into a community home. Typically, the people in the ICF are those with higher support needs (hence higher cost) in the community and if one uses the average cost for community they will greatly underestimate the actual cost and the funding will not be available to safely care for the population. ”

This is the reply that I received from the HSRI Policy Analyst –

Your concern about the average cost of serving people is a valid one, as an average often masks outliers that can be important to consider.

 

HSRI 5 percent

 

 

Senator K and others in the legislature who believe the “average” cost of care is the number to use when trying to clarify budget needs – please ask for more accurate data from DSHS and DDA regarding at least the average cost of care for each assessed level of service.  That information would be much more useful in forcasting cost and services than the overall average.

 

 

 

 

Our Citizens are worth the fight to maintain civil rights

Let’s uphold the civil rights of all of our citizens, regardless if they are able to stand up for themselves or make their voices heard.

Over and over again, we hear about a fictitious number of DDD clients who do not receive services, we hear about  how keeping our RHCs open takes away services from those who may need services and our most vulnerable citizens with the most complex needs are continually accused of using more than their share of the pot which makes others go without. 

 This is the “Big Lie” that is told over and over again by agencies which masquerade as Disability Advocates.  They state that it is cheaper to care for these individuals in the community – yes, that’s true if you do not support their assessed needs.  That’s this issue – these individuals have needs that have been assessed and they are in the environment which best supports their needs in order for them to be as active and successful in their life and community as they can be. 

 Yes, there are individuals with just as complex needs living in the community – no one is denying that fact.  Also, no one is telling those individuals or their families that their care is too costly so they will be evicted.  These individuals are celebrated for the fact that they live in the community  – no matter what the cost.  But I ask, are they really “in the community?”

 I’ll tell a story of a man that has recently moved out of Frances Haddon Morgan Center.  This man has been celebrated as a success for the Roads to Community Living Grant.  I attended a parent gathering this past spring which was geared at informing parents/guardians of the benefits of moving their loved ones out of an institution.  Brock was the example they highlighted in showing how great this program could be.  There is a video on Youtube entitled “Brock 8” which refers to this gentleman.

 At this gathering, we were told that the transition for Brock was very intense involving many specialists and took about 2 years.   In those two years, there was much property destruction that needed to be fixed due to Brock’s behavior.  Brock and anyone who would be working with him needed to be trained in the Picture Exchange Communication System (PECS) which Brock would be using in his new job situation.  Everyone from the Residential agency, DDD and other programs which were involved with Brock’s transition spoke to the difficulties but that over time (2 years) Brock was able to live in a community home and have a job. 

 What was very interesting to me was that they then said, “He had that job for about 2 months but isn’t working now but we won’t go into that.”  I took that to mean that this expensive experiment wasn’t as successful as they wanted to picture it so they were going to end the success story at this point.   I later asked about this but due to HIPPA, I am not privy to the information but was told that yes, Brock was not working but was “volunteering.”  There had been a change in vendors and since it had taken several months to train the previous vendor, it would be anticipated that there would again need to be months of training for a new vendor. 

 I do know that there are two young men who have moved out of an institution into a community home.  For these two men, who cannot have others living with them due to safety issues, the staff and housing for each of these men is at least $500,000 a year.  (DSHS)

 I was provided with the list of the 30 most expensive clients for community residential clients by DDD.  The average annual rate for this group is $218.000 per year (range = $181,603- $353,973) – that is only the portion of care that DDD expends.  This does not include other services in the DSHS package such as medical, economic aid, transportation or food stamps.   There are other clients who receive 16 hours private duty nursing care in addition to other services to enable them to live in a community home.

{For reference, the average annual comprehensive cost for an RHC resident is $186,000 (DSHS)}

 These are the complex care clients who live in the community and these clients are expensive no matter where they live.  Moving more complex clients out into community homes against their wishes only for the sake of ideology of the masquerading advocates is a nightmare.  There is so much wrong with this scenario yet because of the untruths and rhetoric that are continually published without question, people believe what they are told. 

 

Our citizens deserve better. 

 When a person chooses the environment which works for them as guaranteed under Federal Decisions, no one should be able to evict them from their homes.  On top of this, the reasons given are under false pretenses:  less expensive, more involved in community, better care – none of these reasons can stand up when the facts are presented.  The problem is that the facts are not presented or presented but tossed aside because they do not support this ideology gone awry. 

 One huge part of this problem is due to the silo effect as explained in my previous post.  Sure, maybe moving a client out of the institution would make the DDD budget less but those costs are still there under another program within DSHS or put upon the community (as in increased emergency calls to the Fire and Police Departments.)  It’s time that our government, legislators, advocacy agencies and citizens were responsible and looked at the whole picture of care – not just the peephole that suits their cause. 

 It is clear from actually looking at the figures that in reality, the comprehensive care in the RHC is much more cost effective than care for an individual who chooses to live in the community.   I don’t understand why the residents who choose to live in the RHC, which is clearly a cost effective care center which supports their assessed needs, are harassed and threatened with eviction, due to their care being expensive when in reality, their care is less expensive than if they chose a community setting. 

 Yet, if they chose a community setting, the cost of their care would greatly increase, yet these same advocacy groups who complain about their current care being too expensive, would then celebrate in the fact that their care is now community based, yet much more expensive.   

THIS JUST DOES NOT MAKE SENSE if one really cared about the person.  So, obviously, this issue is not about the care of the person but about something else.  Who are these advocacy groups really advocating for? 

 

 

Works Cited

DSHS. “DSHS Client Services FY 2007-2008.” n.d. http://clientdata.rda.dshs.wa.gov/ReportServer/Pages/ReportViewer.aspx?/CSDBAnyYear/Landscape_StateClientSvcsByAge.


Washington State Senators who voted “Yes” on SSB 5459 are tagged in this message.  I don’t believe that these Senators were exposed to the real issues or that the facts were presented to them.  I believe that their decisions on this case may have been based on rhetoric and false assumptions that prevailed in the legislative session.  I would love to talk to any of them and try to educate them on the real issues with real people and real cases involved.