In hopes of understanding the Support Intensity Scales Assessment

This posting is very complicated.  I’m trying to make the Support Intensity Scales (SIS), which are used to assess our folks with ID, understandable to those who are reading reports.  These scores are used and have been reported in “research” by DDD but unfortunately, the author does not report the significance of the scores nor use as they are intended by the developers of the SIS.  My hope is to clarify the issues and to show what these scores really do represent by the assessments that were completed in Washington State.

Information regarding the Supports Intensity Scales (SIS) – used in Washington State to assess the support needs of individuals with Intellectual Disabilities.

The purpose of the SIS has 3 sections:

Section 1:  Support Needs Scale – 6 Life Activity Areas

  1. Home Living Activities
  2. Community Living Activities
  3. Lifelong Learning Activities
  4. Employment Activities
  5. Health and Safety Activities
  6. Social Activities

Section 2:  Supplemental Protection and Advocacy Scale (WA does not use this portion in the DDD assessments)

Section 3:  Exceptional Medical and Behavioral Support Needs – to be seen as significant, the score on this section must be greater than 5 (range 0-32 Medical, range 0-26 Behavioral) or have at least one area score a 2 (range 0-2).  If the answer is yes to any of these questions, it is highly likely that the individual has a greater support need than others with a similar SIS Support Needs Index.

The presence of exceptional medical and behavior support needs is higher in the RHC populations than the other two populations.   Those who score in “exceptional need” will have higher support needs than other clients who may have the same Support Needs Index Score.

This graph indicates the frequency distribution of the Support Needs Index – you can see it follow the typical bell curve.  The cost of care increases as the SIS increases.  For those with significant exceptional needs, their cost of care will be more than someone else with the same SIS Support Needs Index Score.

It is clear from the data presented that those in the RHC have significantly higher support needs and exceptional medical and behavior needs than the residents in the Community Residential and Other Community Residential.  I have written to Barbara Lucenko and Lijian He, authors of the DDD Report several times to have them clarify and correct their information or to at least explain thier conclusions but they have not responded.  I hope that other research which is done in our state is more reliable than some of these reports published by DSHS.

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