Clarity!

 

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.

 

 

 

 

Who would you consult for a health problem?

If you suffered poor health due to a disability who would you seek the advice of a medical doctor or a social worker?

People are trained in specialties and it is prudent to seek advice from the experts in the field you may be concerned about.  I think this is a generally accepted and logical plan but for some reason those advocating for the health and safety of our most vulnerable populations, do not consult professionals and experts in the health and medical fields.

We are allowing experts in social work, special education, political science and other non-healthcare related fields to make health and safety decisions.  Is this logical?  Is this safe?  Do these non-healthcare professionals understand the holistic issues of caring for many of these people with profound developmental disabilities?

The Washington State Auditor’s Office recently paid BERK & Associates together with their subcontractor, Human Services Research Institute (HSRI) $489,500 for a Performance Audit of the Developmental Disabilities Administration.  These companies made recommendations which drastically affect the health and safety of many of our citizens yet do not have the expertise or qualifications to make health and safety decisions.

Using non-experts  for healthcare and safety decisions greatly puts our loved ones lives at risk.

Is this how you would make health and safety decisions for you or your family – by asking an expert in Art History or Urban Design?  For some reason Washington State believes this is okay.

 

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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Developmental Disabilities in Washington – First 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.

First Flaw:

Data from the Research and Training Center on Community Living (Status and Trends Through 2010) were used for charts.

The Auditor’s report did not fully represent the data regarding people with ID/DD (Intellectual/Developmental Disabilities) served in settings of 16+ residents.  States have both state and private residential services and one needs to look at both types in order to compare services in various states.  Each state is different in how they manage their services.  Only looking at state services as the Auditor’s report does shows a very skewed representation of the real data.

The chart below is how the State Auditor represents that data:

Exhibit 7

The chart below is taken from the same report which the State Auditor used but has the full data regarding residential settings of 16+ residents on it – both state and private.  One can see there is a major difference in the appearance of the bar graph when one uses the full data.


16+ settings

The chart below is the same as the chart above but has the bars differentiating the state and private settings.

state and private

Auditor Charts

Auditor charts page 2

Bibliography

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

Larson, S., Ryan, A., Salmi, P., Smith, D., & Wuorio, A. (2012). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2010. Research and Training Center on Community Living, Institute on Community Integration/UCEDD. Minneapolis: University of Minnesota.