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.

King 5 News “Investigation” is misleading

Clarification on some of the information that Susannah Frame has reported in her “investigation” is needed.  My goal with providing clarification and resources is to encourage a discussion based on facts.

The nature of  an intellectual disability means people have cognitive impairments which may mean that other people will need to help them to make decisions, or make decision on their behalf.  Their quality of life will depend on the availability of skilled supports.  Some people will need more than others and this is why we need to have a full continuum of care to manage the wide variety of needs of this heterogeneous population. Personally, it does not matter to me what community a person chooses but it does matter that the person is given the truth about the options and that they have a choice.

Again, the story is not “community vs institution” but how do we best serve our most vulnerable people.  Continuing the either/or argument only hurts everyone.  Let’s look at the facts – not just wishful thinking – and work together to improve the quality of life for people all across the board.

  1.  Susanna Frame stated ” In all, 16 states have closed all of their large facilities for the developmentally disabled, including Oregon, Hawaii, Alaska, New Mexico and Oklahoma. These states are serving this entire population in community settings” http://www.king5.com/story/news/local/investigations/2015/11/03/washington-state-developmentally-disabled-residential-habilitation-center/75065984/
  2. In actuality, they may have closed their “state operated” intermediate care facilities (ICF)  but there are private ICFs in almost every state and if the state does not have a private ICF to use for a resident, the state will send that resident to another state for that care.
    1. Reviewing the reports to the Centers for Medicaid and Medicare  – form 64 (CMS -64 – the statement of expenditures for which states are entitled to Federal Reimbursement) there are only 2 states which did not receive reimbursement for ICF costs. (Oregon and Vermont did not have any costs, Arizona is excluded due to their non-reporting on this CMS report)
    2. If what Susannah Frames states is correct, why are these states receiving Federal funds for something they have closed?  That needs to be investigated.

The chart below has data retrieved from the CMS 64 Quarterly report for 2012.  As one can see, Washington is not “decades” behind when the data and resources are revealed.

ICF costs for 2012

References

“CMS – 64 Quarterly Expense Report.” 2012. <https://www.cms.gov/Research-Statistics-Data-and-Systems/Computer-Data-and-Systems/MedicaidBudgetExpendSystem/CMS-64-Quarterly-Expense-Report.html&gt;.

“Community Living and Participation: Embracing the Complexity.” Intellectual and Developmental Disabilities 51.5 (2013): 423-427.

Larson, S.A., Hallas-Muchow, L., Aiken, F., Hewitt, A., Pettingell, S., Anderson, L.L., Moseley, C., Sowers. M., Fay, M.L., Smith, D., & Kardell, Y. In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and trends through 2012. Minneapolis: Univer: University of Minnesota, Research and Training Center on Community Living. Institute on Community Integration, 2014.

United States Census Bureau – Population Estimates – National Totals 2014. 2014. <https://www.census.gov/popest/data/national/totals/2014/index.html&gt;.

Protect Olmstead Report Language

Deinstitutionalization – The Committee notes the nationwide trend toward deinstitutionalization of patients with intellectual or developmental disabilities in favor of community-based settings.  The committee also notes that in Olmstead v. L.C. (1999), a majority of the Supreme Court held that the Americans with Disabilities Act does not condone or require removing individuals from institutional settings when they are unable to handle or benefit from a community-based setting, and that Federal law does not require the imposition of community-based treatment on patients who do not desire it.  The committee strongly urges the Department to factor the needs and desires of patients, their families, and caregivers, and the importance of affording patients the proper setting for their care, into its enforcement of the Americans with Disabilities Act.”

Although this language simply requires the Department of Justice to adhere to Olmstead when enforcing Olmstead, some federally-funded organizations that favor serving everyone in community settings without regard to individual choice and need, have somehow found this report language threatening and are now urging the Senate to reject it when it takes up the Senate Commerce, Justice and Science, and Related Agencies Appropriations bill as early as this coming Monday.”

Your letters and support are needed NOW to inform your Senators of this issue.  It is very simple – just follow this link:

VOR – Protect Olmstead Report Language

 

Please take action before it is too late!

THANK YOU!

 

Text above taken from the VOR website

Olmstead Celebration Event (celebration of the misinterpretation of Olmstead)

Olmstead Celebration

 

The invite reads:

 

“On June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act.  This landmark Supreme Court decision requires states to eliminate unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate to their needs. ”

The Department of Health and Human Services and The Department of Justice need to read and understand what they, themselves have written:

 

eliminate UNNECESSARY segregation

receive services in the most integrated setting APPROPRIATE to their needs

Olmstead also guarantees INDIVIDUAL CHOICE 

Unfortunately, neither of these agencies understand what this means and use a heavy handed, judgmental approach to force people and evict people from their homes of their choice and needs – and they are doing this under the guise of Olmstead.

I know that I will be listening in to hear how they rationalize their harmful and draconian actions.

Here is the rest of the announcement:

In observance of this important milestone, please join senior officials from the U.S. Department of Health and Human Services (HHS), and the U.S. Department of Justice (DoJ) for a celebration of the Olmstead decision.  The event will also feature three panels of speakers on the past, present, and future of Olmstead as well as a screening of a DOJ-HHS video that includes testimonials from people whose lives were changed by the Olmstead decision.

Friday, June 20, 2014

Great Hall

Hubert H. Humphrey Building

200 Independence Avenue SW

Washington, DC 20201

1:00 p.m. – 2:30 p.m.

Please indicate your response to this invitation by contacting Evelyn Hernandez by email at Evelyn.Hernandez@acl.hhs.gov by June 13th.  Registration is required and space is limited.  If you have questions please call Evelyn at 202-357-3518. Please call if you require special accommodations.

For those not able to attend the event in person, HHS Live will carry the event live at http://www.hhs.gov/live/.

 

Olmstead_15th_Event_Invitation 

 

White House Petition regarding Olmstead

We must work together across this great country to protect our most vulnerable citizens.  This petition, started by the Murray Parents Association in Illinois, is part of the plan to stop the injustice that is spreading.  Please sign and circulate.

Link to We the People – Your Voice in our Government – Petition to The White House

 

www.MurrayParentsAssociation.com  ( From Laurie Stengler)

I have submitted a petition to the White House to request enforcement of Olmstead to include the right of the disabled to choose institutional over community based living. We have until 12/20/2012 to accumulate 25,000 signatures. After reaching this threshold the White House agrees to review the information and send a response to all signing the petition. I am really hoping we can a strong show of support for this and any help you can provide is much appreciated.

Please consider signing the petition and forwarding this information to others. We need to let the Obama administration know that enforcement of this decision has gone too far compelling states to close vital centers and putting the most severely disabled at risk for abuse and neglect.

 

Thank you – please forward to people so we can gather signatures!

VOR slams Department of Justice for Dangerous Decision

What is VOR?

 

VOR is the only national organization which advocates to protect the rights of individuals who cannot speak for themselves. VOR, a nonprofit 501(c)(3) has been advocating for over 25 years in support of family decision-making rights and continuum of care options for people with developmental or intellectual disabilities., including their own home, family home, community based options and facility-based care.

 

VOR is the only national advocacy organization that expressly opposes efforts to eliminate the facility option while also supporting expansion of quality community programs. VOR advocates that the final determination of what is appropriate depends on the unique abilities, needs and desires of each individual, with the input of family and guardians where necessary and appropriate.

 

VOR really cares about the individual and is not bound by ideology which limits choice, person-centered planning or self-advocacy.

 

VOR has the voice that we need to hear more of – Please support VOR and their work.

Please see this link for Department of Justice Decision to learn about this most dangerous settlement

http://www.vor.net/news/25/260-vor-slams-justice-department-plan-to-close-virginia-centers-for-disabled