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.





If you choose premium, you also choose to pay more for premium

I really hate to get into this topic because it will could be detrimental to many in the community and I really do not want to force anyone out of their home – but given that, I believe it is important for you all to know what the actual costs of care for people with high support needs is.

Yes, it is true that there are many in the community with high support needs.  I would ask you all to ask Don Clintsman or Mark Eliason to gather the daily costs for these clients and what those costs cover.  This will most likely be direct care only since that is the majority of the costs that DDD pays for.

The folks in DDD and DSHS can easily acquire this information.  They know who is the most expensive and what their costs are.  Rather than looking at the “average” for all on the waiver, look at the costs for those with the highest support needs.  I believe when you receive this information you will have a much clearer understanding of what the costs are in the community for those with high support needs.

Listen again to what Lance Morehouse said on September 25.  He stated that with the help of 19 hours a day of licensed nursing care his son was able to be at home in the community.  Now try to imagine what the cost of care for him was.  Surely it was much higher than the average cost of care for COMPREHENSIVE care in the RHC.  Just because a person with high support needs can live in the community does not mean that it is equitable and fair and if you want to talk about rationing costs and services, look at these folks too.

If families chose to use community care which is more expensive for those with high support needs, should they not be expected to pay a little more too?  Why would this be any different than how insurance companies pay a percentage?  Or when you want premium gas you have to pay a little more.  I believe if you are choosing “premium” then you are also choosing to pitch in a little more rather than taking more of your share because you can.

This is what I talk about when I say that community care for those with high support needs is more expensive in the community.  If the issues are about cost, then this issue really needs to be looked at accurately.   I would love to see a graph of the numbers of people in the community settings by their average daily cost connected to their support needs.

I do not like to talk about this issue this way because I believe it may be hurtful to many and I would never wish to force someone out of their environment due to the cost.  A human life is priceless. We do need to think about finite resources and how to share those resources better.  We hear so often that those in the RHC are taking more than their fair share but what about those in the community with high support needs?  No one talks about the piece of the pie that they are taking.

In WAC 388-845-0110 regarding limitations of the Home and Community Based Service Waivers it states:

(4) The cost of your waiver services cannot exceed the average daily cost of care in an ICF/MR.

Taking this information into consideration, I would be interested to know how many of those on the waivers have a higher daily cost than the average cost of care in the RHC. When thinking of this it would also be good to keep in mind that this would only be the DDD costs which would be mostly direct care costs.  Therefore, those in the community could have a higher cost for direct care because the average cost of care for the RHC is all-inclusive.

So, when looking at this, I wonder about what is really being spent on individuals in the community.  Is there a way to divvy up the resources that are already there to better share those equitably?  Maybe use a cap of the average daily RHC rate as the WAC states rather than let the costs for individuals get out of hand.

I fully support community care and I also have to think about sharing services so that more people can have services.  That means that some will have to go without some of the services they have had and they may need to look elsewhere for some help but it also means that there will be more to share with those who are not receiving anything.  Isn’t this the fair and equitable way?