Public Disclosure – It’s your government, ask for your information

Ask for and research through documents – you may find some very interesting information.  I did.

I knew that the information being reported by the Department of Social and Health Services and the Division of Developmental Disabilities could not be correct.  Knowing what our son’s cost of care was at home did not match up with what DDD was saying the cost of care for people with developmental disabilities in the community was.  DDD had grossly misrepresented the cost of care – this is clear but what I don’t know is WHY?  No one will step up to the plate and answer this.

I do know that DSHS and/or DDD publish cost of care statistics and these are used without question by most “advocates” for people with ID (Intellectual Disabilities).  I realized this after asking so many people in The Arc organizations about these costs and was finally told that they do not research this information themselves but only take the information which DDD gives them.  This answer solved some of my mysteries but also made me again question WHY?

These are answers that I have assumed and please, if someone knows differently, let me know.

1.  Since these false statistics support the “no congregate care” agenda of the Arc, they will use these statistics to further that agenda.

Personally, I don’t care what one’s agenda is but I do care that the data is reported correctly so that people can be informed when making decision.  So, if one is totally against congregate care use a more appropriate argument than the cost of care.  If you do not want congregate for anyone, it is going to cost a lot more and fewer people will have services.  You need to make a choice.  Using fake expense data to support this issue only hurts everyone.

2.  These false cost reports support the vendors who make more money off of the people in community residential settings.  If you question this, take a look at the IRS 990 forms for Supported LIving, High Earner Compsensation, profits/losses forms and the compensation that some of the executive directors earn.

3. Reviewing the Certified Residential Provider Care Reports which each agency submits to DDD, their reported costs, reimbursements and resident support needs to not correlate to the data which DDD reports.  Looking at these reports, one sees a very different picture and it is clear that those with higher support needs have higher costs of care.  The most telling issue from these reports contradicts what DDD states.  By the cost reports, the cost of care for those with higher support needs IS MORE IN COMMUNITY RESIDENTIAL than in the RHC.  

The following chart looks at those individuals with a support needs index (SNI) in the range of 18-24.  The SNI is a measure from 0-24 which looks at the number of hours a person needs support.  This is data taken directly from the certified reports and it is clear, contrary to the words of DSHS, DDD and The Arc, the cost of care is MORE EXPENSIVE for those with higher support Care needs in the community residential setting than in the ICF/ID.

Cost of Care for high support needs residents is more expensive in the community residential than in the ICF/ID

What I would really love to know is why DDD, the agency that is set up to protect our most vulnerable citizens, uses these false reports to influence legislators and policy decisions.  These decisions, rather than saving money as DDD states,  end up costing money (because that is when the real costs are evident) and a reduction in services.  There has been a continual decline in services for people with ID while at the same time, DDD states that reducing the census in the Residential Habilitation Centers will save money and open up more services for people in the community.  Where is that data which supports this?

This continued falsifying of budget data will continue to contribute to our crisis.  When is this going to stop?



The Almighty Dollar more important than peoples’ lives?

Below are excerpts from letters that I have received by those who make profits from residential services.  I understand the attacks against me since he views the accurate data being presented from original sources as a threat to his livelihood. 

What I would really like him to consider is the threat to the lives of those less able them him who will have all funding and resources cut if this data is not looked at accurately.  He is refusing to do that but instead throws arrows at me by saying the data is  manipulated.  The data is presented exactly how DDD records it in their records, how the agencies themselves report it to DDD and how the agencies themselves report to the IRS – hardly manipulated on my end. 

This CEO has clearly not read the reports nor is he aware that most of my research is geared toward improving the quality and safety of  care to those who do not reside in the RHC and to also bolster services and resources to people in the community at large.  His fear and anxiety about true data being exposed is clearly evident in his attacks.  It’s interesting that he does not counter-present with facts that would indicate what I have is incorrect  – I assume that is because those “facts” are non-existent. 

“I will not be communicating with you in the future as it is obvious that you are unable and/or unwilling to support community services, which is evidenced by your focus on presenting deliberately misleading data to state personnel and legislators.

Your lack of knowledge and understanding of services and funding is glaringly apparent in one report that you posted in which you claim that the “Cost correct for Resident Acuity” is over $850 per person for the Arc of King County, while you list the RHC costs at or below $200.  I fully understand that you are the parent of a person that resides within an RHC, and that you believe you are advocating for all people who experience an intellectual or developmental disability to have access to a continuum of care.  However, your approach plays as one-sided, is immensely inaccurate, slants towards de-valuing community residential services, and does notsupport a continuum of care.

Your continued efforts on a daily basis to distort the truth and inflate the data to present community services as more expensive sends the erroneous and destructive message to decision-makers that services can be further cut.  You are playing a dangerous role in your efforts and as such, I ask if you are even aware that your efforts will lead to further erosion of community services for people with developmental disabilities and will have grave and serious impacts upon those individuals who currently live independently in the community with community residential supports?

With regard to the data you present, I wanted to make some corrections.  It is important to correct these inaccurate figures since one of the reasons that we continue to face cuts is because individuals and organizations present data that has been either incorrectly calculated or misrepresented to somehow convey that community programs are more expensive, therefore being overfunded.  By presenting reports that state community programs are expensive, it sends the message to legislators that we should be cut.  This is part of the reason why we are in this crisis. 

Alpha Supported Living Services’ costs, on average, are above the average because 1) we are located in King County, which has the highest cost of living and therefore highest benchmark funding, and 2) we serve some more challenging individuals so our costs are higher than the average acuity level.  For example, over 40% of the individuals supported by our agency formerly lived in an RHC, 33% have a diagnosis of Autism, and approximately 40% have an accompanying mental health diagnosis.  As such, our costs are higher than the average due to acuity levels. “

This last point regarding costs are higher for higher acuity is one example that I have been trying to communicate – it is good to see that he recognizes that fact here but when speaking to legislators and the public, that would not be addressed.  As an example the attached graph indicates the cost of care as reported by each agency with respect to their reported “Average Hours per Day for Resident Care” – a measure that indirectly looks at client acuity.

Cost of Care chart with hours per day as reported by each Supported Living Agency

It is interesting to be aware that the average cost of care reported by DDD is $6400.00 a month.  This average cost is equal to about 11 hours per day.  On this chart, the highest reporting agency had 21.65 hours at $10,816 per month and the highest cost agency reported 18.22 hours per day at $15,620 per day. 

Another VERY critical issue is that these reported costs DO NOT include medical, dental, nursing, psychiatry, prescription medication, therapies, education, vocational training, habilitation, FOOD and RENT. 

My message as an advocate for a continuum of care is that these residents with high support needs are EXPENSIVE to care for no matter where they live.  It is more cost effective, safe and less restrictive for many of them to live in the RHC.  These are the FACTS – no manipulation, no inflation, only the facts. 

This is the information which needs to be shared and understood – when people try to cut corners and under-report, people die.  We have seen this happen already this past year. 

The Stand Opinion