The Last of the Institutions – corrections to investigation

Update January 7, 2016 regarding inaccurate data used in the DD Audit by Washington State Auditor – see red notes below

Corrections and clarifications are needed by Susannah Frame from King 5 News regarding her “investigative” series “The Last of the Institutions.

Ms. Frame and Russ Walker, Executive Producer King 5 Investigators, have both been notified of these issues and have been given more accurate and objective data and research.  Our hope is that they review the information and research they have been provided and produce a more accurate portrayal of the very complex issues involved with the care of our citizens with intellectual and developmental disabilities.

  1. DDA Case Load and Costs Oct 2015 with Explanation – the reporters failed to mention that the costs attributed to the RHCs actually include costs for an average of 65 “community” clients who utilize the RHCs for short term stays, respite care, crisis care and other services.  This link has the explanations as provided by the Communications and Performance Unit Manager at DDA.
  2. These 65 clients are a non-duplicated number each month so in reality there could be 780 community clients who have their care and services billed to the RHC.  When looking at it this way it is clear that the RHC serves those in the community just as much as it serves the permanent residents.
  3. The DD Performance Audit is riddled with inaccurate data and has failed to capture much of the critical information needed to run a real performance audit.  Information about some of the issues can be found on this website under DD Audit.
  4. The DD Audit also uses resources that non-existent.  For instance, the DD Audit states they used the National Core Indicators Consumer Survey for Washington State 2009 -2010.  Washington State did not participate in the Consumer Survey by the National Core Indicators for the years 2009-2010.   Still trying to locate the data and the report the DD Audit team used for their information.
  5. In addition to questionable resources being used, the National Core Indicators are biased in their ability to capture the voice of those with more profound levels IDD and/or pronounced communication impairments. This population is excluded from the survey
  6. The NCI data is not a “national average” as reported by the DD Audit report.  The survey is only an average of the 16 states that voluntarily use the survey.

 

Response from the Human Services Research Institute in answer to my questions about our State Auditor DD Performance Audit which incorrectly referenced the NCI data for their audit.

In the past, WA collected the Adult Consumer Survey data during a time period that crossed over two separate NCI collection years – between Jan 2007 and Dec 2008.  (see below email from Lisa Weber, PhD) 

Because of this, the data could not be included in the national averages for the year 2009-10.  WA was issued a separate state report on these data (see attached.).

However, these data were included in the chart generator for the 09-10, but are NOT included in the NCI average on the chart generator for that year.  When you look at the data on the chart generator from 09-10 for Washington, please keep in mind the circumstances described above (especially if when comparing to the NCI average.)

Your question brought to my attention that this information should be noted in the chart generator for WA for that year.  I will work on getting that info added.

Referenced email from Lisa Weber, PhD (Washington State):

The attached file contains our data from the NCI Consumer Interviews.  There were 545 adults who participated in a Consumer Interview.  The interview responses and feedback forms are store in separate Access databases.

We have a two year data collection cycle, so this data was gathered between Jan 2007 -Dec 2008.  It was all gathered using the old version of the interview form.  We modified the data entry forms a bit to cover our additional questions and to make the data entry easier for our quality assurance staff, but the numbering of the NCI items in the tables has been left intact. 

Please write to Susannah Frame at sframe@king5.com and rwalker@king5.com to express concerns regarding the lack of objective reporting in this investigative series.

Performance Audit – Second Flaw

Washington State Auditor’s Office published the Performance Audit “Developmental Disabilities in Washington:  Increasing Access and Equality”.  It is very unfortunate that the Auditor’s researchers did not understand the issues and what the data represented.  Many significant issues were left out or misrepresented in this report.   There are many flaws in this report.

This flaw relates to the inclusion of and information provided with the National Core Indicators (NCI).  The National Core Indicators are a project of Human Service Research Institute (HSRI) one of the two agencies contracted by Washington State to perform this audit.

The audit states that the data from the NCI is from the years 2009-2010 and the “National Core Indicators (NCI) provides outcome measures used by 25 states to assess the performance of state developmental disabilities service systems and the experiences of individuals receiving support.”  The data reported in the Audit charts does not match with the 2009-2010 data which is recorded in the NCI reports.  Also, there are only 19 states involved in the survey for the year 2009-2010.  Please, as auditors, it is important to get your information and sources correct!

“To understand Washington’s performance from the perspective of those it serves, we compared Washington’s results for National Care Indicator (NCI) outcome measure surveys to other states’ results.”  (Kelley, 2013)  This quote leads one to believe that the NCI provide an overall view of the outcome measure by those who Developmental Disabilities Administration (DDA) serves.

Unfortunately, this if far from the truth.  Those who live in the supportive communities of the Residential Habilitation Centers or in nursing homes are not surveyed.  In addition to excluding this population, the survey itself is in two phases.  If a person is unable to answer the questions in phase 1, they are eliminated.  Those remaining are advanced to phase 2 of the survey. Depending upon the year the survey was administered and if proxy answers were allowed, the actual percentage of valid surveys changed.  For the year 2009, an average of 68% were allowed from phase one, of which 98% of those were valid in phase 2.

This means that only 61.7% of those surveyed had valid responses in the year 2009-2010.

In addition to the issues of percentages of survey answers which are valid, it needs to be noted that NCI uses a minimum sample size of 400 to be valid. They do include states which did not meet this number for a 95% confidence level.  One needs to understand this when comparing states and when looking at the national average.  In 2009-2010, 4 of the 19 states did not meet this sample size to ensure a 95% confidence level but were included in the national averages.

Washington State survey had about 623 for phase one and 395 for phase two – which means that about 63.4% of the surveys were valid.  This is difficult to accurately count due to inaccurate information provided from the audit and limited availability of data from NCI.

These surveys are not helpful, particularly when they are not reported accurately, to assess the needs of our population with ID/D.  Excluding whole segments of this population from even participating is an indicator that those who cannot speak for themselves are not valued.  All people matter and all need to be heard – stop excluding and dehumanizing those who are unable to communicate by speaking.  Just because their voice cannot be heard (or understood) does not mean that they cannot chose and make decisions by other means.

We need to listen to those who cannot speak for themselves too!

National Core Indicators – charts which highlight the misrepresentation used by the State Auditors.

Human Services Research Institute. (2009-2010). NCI Charts. Retrieved from National Core Indicators: http://www.nationalcoreindicators.org/charts/

Kelly, Troy. (2013). Developmental Disabilities in Washington: Increasing Access and Equality. Permormance Audit Report No. 1009938, Washington State Auditor.

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Child Family Survey – letter to DDC

 

 

 

Dear Developmental Disabilities Council,

Thank you for publishing the National Core Indicators Child and Family Survey which included the DDC Review Panel Recommendations. (Chld Family Survey)

I notice that many of the recommendations state information should be shared with other organizations who may find the information useful.  This also includes collaboration with parent support and advocacy groups to ensure families are connected to support in their local communities.

This collaboration is especially important when families are in or close to a crisis.  These supports need to be in place and available when families need them.

The Panel recommends that organizations (DDC, DDD and other advocacy organizations) find avenues to fill gaps for families who are not receiving information regarding services/supports which may be available.  It is also recommended that the Division (DDD) provide more choices in service and support to allow families to make real choices.

In addition to the above recommendations, I find one which reinforces my belief that the DDC should provide families support and strategies on connecting with their community.

Given these highlighted recommendations, I believe that the Developmental Disabilities Council needs to be more cognizant of the advocacy groups in our state and treat each group with equal access to not only receive information but to distribute information.  This is true choice and will enable the families to choose the information which best fits their circumstance.

Without this freedom of choice, families are restricted to information which promotes only one view and does not support a continuum of care and services for our community members.  This view and restriction is discriminatory – not only to our community members with developmental disabilities but also their families and the community at large.

It’s fine to look at models – but we must remember they are only models – they may not be the right fit for everyone.  The Developmental Disabilities Council needs to recognize this and allow not only the most prominent advocacy groups to disseminate information but give equal space to the grassroots organizations – many of which are much more in tune with the reality of life for these families.

These groups have much to offer – it’s time for the DDC to acknowledge their existence, research and recommendations.

Thank you,

Cheryl Felak, RN, BSN

Disability Advocate – Parent

Because We Care – Beyond Inclusion