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

Washington State Institute for Public Policy

I have written a letter to the Washington State institute for Public Policy (WSIPP).  This institute was created by the Washington Legislature in 1983 to carry out practical, non-partisan research – at legislative direction – on issues of importance to Washington State.

I believe that the issues related to safe, quality and cost effective care for our citizens with developmental disabilities needs to be revisited by this institution.  Please see my letter to them which highlights some of the areas of concern.

Letter to WSIPP Board of Directors

Letter to Don Clintsman, Assistant Director, Division of Developmental Disabilities – Please answer these question