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.





Spinning (a tale)

Drop Spindle

I am a hand spinner and greatly enjoy the various fibers in my hands, spinning onto a drop spindle to make yarn.  From the spindle, the yarn is wound onto a device from which a skein is made.  The yarn becomes a bit stretched on the device and when removed, the yarn shrinks to it’s final length.  The skeins are labeled by their yardage and so this natural shrinkage needs to be taken into consideration.   The spinner needs to know how much the yarn will shrink in order to accurately label the yardage so that the knitter knows how much to purchase in order to make and finish the project.

There are some agencies, advocates and legislators who spin a story regarding the support, care needs, costs of care, residential setting choice and person centered planning for many in our community who live with intellectual and developmental disabilities.

The problem we face is a matter of underestimating costs rather than overestimating.  Much of the problem is that the legislators use “averages” of the whole for budget forecast rather than “averages” for a specific population.

Last year I provided legislators with the costs of care for my son who resides in supported living.  He had been a resident of the intermediate care facility  (ICF) and only moved to supported living due to issues of medical/nursing care that could not be met at the ICF.  Last year, his cost in the community was higher than the cost of care in the ICF.  This year his costs will be higher still due to needing more 1:1 support and the fact that he lives in Seattle and the agency (not state funds) must pay the caregivers the Seattle minimum wage ($15.00/hour) rather than the contracted state remibursement (wages start at roughly $11-12.00/hour)

One of our seasoned State Senators wrote ” Obviously some clients need more supports than others.  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 with many different client and settings, and 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.

As follow up, this senator then wrote “The cost of community care is lower than the cost of RHC care.  That is known by our budget writers because we pay the bills.  Individuals have variances, but the OVERALL cost is lower.  We have had hundreds of RHC clients transition to community care so we have real experience and real data on this.  By providing your personal experience to Senator  you have convinced her that it applies to the overall cost of care, and that is not accurate or factual.  I hope you will help me correct the record. “

I did follow up with a response as to why the costs I reported were very important to take into consideration since my son was representative of the type of resident in the ICF that may desire to move to a community home with supported living.  I wrote ” The issue of providing data for my son is extremely relevant to this issue, it is factual and accurate.  I provided the exact documents that were provided to me by DDA so if for some reason they are inaccurate, that is an issue that needs to be addressed with DDA.  I would be more than glad to provide you with the same information.”   I did not hear back from her.

With the upcoming legislative season just around the corner, this annual issue will again come to the surface.  We need not only affordable housing but trained caregivers for these people with higher support needs.  We need to look at the cost of care for this specific population – not the OVERALL AVERAGE as the senator above thinks is more accurate.  I totally disagree with her assessment and understanding of the care needed and cost to provide this care.

New Hampshire has developed a High Cost Review Committee which looked specifically at those with higher support needs, thier Support Intensity Scale score and the costs of care.  Below is a graph documenting some of the costs attributed to people in different residential settings in New Hampshire.

NH HCBS costs June 2015

The graphs below were generated by the data provided by Washington State Developmental Disablities Administration 2017 Caseload information.

WA State HCBS costs per setting August 2017Budget from actual costs not average

If our legislators continue to use the OVERALL AVERAGE cost as the measure for cost of care, we will continue dive into deeper crisis.

In order to best serve our community members and start to crawl out this hole, we need to fund appropriately.  That means that we need to look at the different types of support needs and numbers of people in those categories.  This information is readily available through the Developmental Disabilities Administration – one just needs to ask for the right information and use it.

Developmental Disabilities Administration 2017 Caseload Information…/Final 2017 DDA Statewide Caseload Information Handout_10-13-2017.pdf

Developmental Disabilities Administration 2017 Caseload and Cost Report