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.





What is a continuum of care?

A continuum of care is a model which strives to serve the needs and supports of the people – this is a holistic approach, respecting and honoring the person and their choices.  In my mind, this is the logical and just model but it is a continual fight to try to educate and enlighten others to the benefits to ALL by providing a continuum of care.  Supporting a continuum of care does not deny people the needed supports and services nor does it coerce or threaten people to make choices which would endanger their safety and lives.

Researching issues with the recent audit by Washington State Auditor of the Developmental Disabilities Service System, I learned of the North American Industry Classification System (NAICS).  The North American Industry Classification System was developed under the direction and guidance of the Office of Management and Budget (OMB) as the standard for use by Federal statistical agencies in classifying business establishments for the collection, tabulation, presentation, and analysis of statistical data describing the U.S. economy.

I found something very interesting which actually describes a continuum of care very well:

Sector 62 — Health Care and Social Assistance

The Sector as a Whole

The Health Care and Social Assistance sector comprises establishments providing health care and social assistance for individuals. The sector includes both health care and social assistance because it is sometimes difficult to distinguish between the boundaries of these two activities. The industries in this sector are arranged on a continuum starting with those establishments providing medical care exclusively, continuing with those providing health care and social assistance, and finally finishing with those providing only social assistance. The services provided by establishments in this sector are delivered by trained professionals. All industries in the sector share this commonality of process, namely, labor inputs of health practitioners or social workers with the requisite expertise. Many of the industries in the sector are defined based on the educational degree held by the practitioners included in the industry.

Below are some examples of what are included in this category – it’s odd that the auditors did not include any of these in their recommendations –

62   Health Care and Social Assistance

621   Ambulatory Health Care Services

6211   Offices of Physicians

6212   Offices of Dentists

6213   Offices of Other Health Practitioners

62133   Offices of Mental Health Practitioners (except Physicians)T

62134   Offices of Physical, Occupational and Speech Therapists, and Audiologists

62139   Offices of All Other Health Practitioners

6214   Outpatient Care Centers

6215   Medical and Diagnostic Laboratories

6216   Home Health Care Services

6219   Other Ambulatory Health Care Services

622   Hospitals

6221   General Medical and Surgical Hospitals

6222   Psychiatric and Substance Abuse Hospitals

6223   Specialty (except Psychiatric and Substance Abuse) Hospitals

623   Nursing and Residential Care Facilities

6231   Nursing Care Facilities (Skilled Nursing Facilities)T

6232   Residential Intellectual and Developmental Disability, Mental Health, and Substance Abuse Facilities

6233   Continuing Care Retirement Communities and Assisted Living Facilities for the Elderly

6239   Other Residential Care Facilities

624   Social Assistance

6241   Individual and Family Services

62412   Services for the Elderly and Persons with Disabilities

6242   Community Food and Housing, and Emergency and Other Relief Services

6243   Vocational Rehabilitation Services


The organizations which did the audit and wrote recommendations did not consult with the professionals in the field, nor are they themselves experts in the fields listed above.  BERK & Associates (523930 – Investment Advice) and Human Services Research Institute (HSRI) (541720 –  Research and Development in the Social Sciences and Humanities) only looked at one part of the continuum and tried to fit all people into that section.

For being researchers, HSRI really misunderstands people and the supports and services they may need to keep people healthy and safe.

It is shameful that HSRI is recommending changes in a service system which they clearly are not experts in and clearly do not understand the impacts their recommendations will make to not only the people who utilize those supports and services, but the community as a whole.

Below is a list of the areas of expertise of the BERK & Assoc. and HSRI contracted people for this audit:  Where are the healthcare professionals on this panel?


M.A. – Public policy

B.S. – Finance

MBA – Business Administration

B.A. – Politics

M.A. – Urban Design

B.A – Art History

M.A. – Urban and Regional Planning

B.A. – Geography

B.S. – Mathematics and Economics

M.A. – Urban and Regional Planning

B.A. – Sociology

Ph.D. – Special Education and Rehabilitation

M.A. – Psychology

B.A. – Political Science

M.A. – Public Policy Administration

B.A. – Business Administration and Management

B.A. – Special Education

M.S. – Public Policy and Administration

B.A. – Management of Human Services

B.A. – Psychology

M.A. -Public and Non-Profit Management

B.A. – International Relations

MSW – Social Work

B.A. Health Care Management

M.A. – Administration of Higher Education

B.S. – Family and Human Services,

M.S. – Special Education,

MSW – Social Work

B.A. – Social Work

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.