Illinois transparency laws could be a model for programs providing care to disabled in Massachusetts — COFAR blog

Things to think about to understand the needs and supports of our community members and how they are being met. It should not be a secret.


When it comes to the public’s right to know, Massachusetts state government has not been in the forefront in recent years, and issues concerning the developmentally disabled appear to be no exception. Not only are investigative reports on abuse and neglect of the developmentally disabled largely kept secret in this state, but those reports are primarily […]

via Illinois transparency laws could be a model for programs providing care to disabled in Massachusetts — COFAR blog

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?



Where is the accountability?

I am writing with concerns that I and many others have regarding government accountability.

Much of this has stemmed from the passage of 2SSB5459 last year and the more that I research and uncover through public disclosure, the more I am frustrated by the lack of integrity and accountability that some of our state’s agencies and legislators allow.

This is a very complicated and convoluted mess now and it is highly charged with emotions of people with various ideologies. What is consistent though is the monopoly of decision making by one entity and the censorship which that entity uses so that others with information are not able to present to the public concerning issues which may not support the position of the reigning “expert.”

I am referring to issues regarding care of our most vulnerable citizens. The Department of Social and Health Services (DSHS), The Division of Developmental Disabilities (DDD), The Developmental Disabilities Council (DDC), Disability Rights Washington (DRW) and The Arc Chapters – which actually have a monopoly on almost all social media and groups that have issues pertaining to people with developmental and intellectual disabilities – all have an agenda which they push and utilize false, incomplete and inaccurate data and reports as “facts” in order to gain agreement with their agenda from others.

Logically, I could not see how what they were saying could in fact be true and I started to do my own investigation of data and reports. I have gathered much information through public disclosure and by looking at the original sources; it is clearly evident that the above mentioned agencies are choosing not to look at the data accurately. Any attempt to have accurate data shared is censored and people are not aware of the inconsistencies and inaccuracies that those agencies promote. Due to the inaccurate reports that the above agencies are using, our legislators are making critical decisions that are not based on the accurate data.

Many people are being hurt by these decisions and in fact we have already had one death this year solely due to the passage of 2SSB5459. It is time to stop and take a look at the practices of these agencies and question why they are promoting policies that actually hurt the very people who they are set up to protect.

I have contacted Washington State Institute for Public Policy (WSIPP) regarding some of these issues also. The author of the last report which WSIPP published responded to me that yes, I indeed did have some critical information that needed to be considered but they are only able to do research if directed by the legislature. The problem is that so many of our legislators listen to the above stated agencies’ as the experts and will follow their instruction and recommendation when in fact that is part of the problem.

We need to have an outside entity look into these issues – an independent group which can look at the facts without needing to support an ideology. I have attempted to do this with research but since I am only one person and am reporting information which does not necessarily support the approved ideology, I am censored and silenced. It is extremely difficult to have people look at this information since this issue has gone on for so long and people are most likely sick of it being repeated.

I can tell you from looking at this issue without the ideology one will see a very different picture than the picture painted by the “experts”. Looking at the budget figures alone, the support needs of the residents (as reported by the individual residential agencies themselves) and taking information from DDD and DSHS reports, it is clear that there is a continuum of support needs and as a person has increasing needs, their cost of care for direct and indirect support needs increases. The place of residence does not affect the cost of direct care.

The other issue that will be seen is (as reported by the agencies themselves) the support needs of most residents in the community residential settings do not come close to the support needs of the residents who choose to live in the Residential Habilitation Centers (RHCs). The “experts” will deny this and reference the report “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” by Barbara Lucenko and Lijian He dated February 2011 (

The report referenced above is a perfect example of manipulating the data to fit the ideology even though the data collected in the research did not support the ideology. The data was collected for three different residential settings: Residential Habilitation Centers, Community Residential and Other Community Residential. The data clearly showed statistically significant differences in supports needs between residents in all 3 settings. The author of this report chose to collapse the three settings into two for the “Key Findings” and proceeded to state “Residential Habilitation Centers and Community Residential” and “Other Community Residential” were the two settings. This manipulation totally changes the outcome of the data and this was done in order to support a particular ideology which the data itself did not support.

There are other issues regarding how 2SSB5459 was passed into law. There was a public hearing (with only 20 minutes notice) May 18, 2011. Rule 45 was suspended for this meeting so that bills could be heard without 5 days’ notice. I do not see any written notes regarding the reason for this rules suspension. This public hearing was to be on SSB5459 yet as the public meeting was commencing (again with only 20 minutes’ notice) it was stated that there was now a new substitute bill that was just at that moment going into the Electronic Bill Book.

 How can there be public testimony on a bill that is not even available yet?  Also, it states in the bill history that the First Reading of 2SSB5459 was on May 19, 2011 – the day after the public hearing. Why is the path of 2SSB 5459 allowed to take this very unusual and undemocratic route to passage of this bill?

I have much more information regarding costs, health and safety, quality of care and support needs. I would welcome the opportunity to be able to share this information with people in hopes that some of the decisions that have been made based on information only supporting one ideology can be looked at with a more objective perspective.

Please contact me for information regarding costs reported by agencies, DDD Reimbursements to agencies, Support Needs Index of Residents and cost shifting.

Thank you,

Cheryl Felak, RN, BSN

DDD “No-Paid” Caseload, part 2

Many in our community are confused by terms that are used and what they actually mean.  According to DDD Administration, this is what I have learned regarding the DDD “No Paid Caseload.”  We need to keep the reality of what this term means in the forefront when looking at DDD and DSHS budgets and services which we provide to our community members.

To be eligible for DDD, one must meet the eligilitiy under  RCW 71A.10.020  Our state’s DDD agency reports the “Total DDD Caseload” in reference to the number of persons who have a current determination for DDD eligibility.

DDD eligibility does not mean that there are paid services.   DDD paid services are dependent on availibility of funding and/or eligibility for the specific services.  The Medicaid State Plan services and services to people enrolled in a Home and Community Based Waiver are not limited by availibility of funding but must meet the eligibility requirements for those programs for services.  Not all people with DDD eligibility meet those requirements.

For all other services, an individual must meet eligibility requirements as well as the division having funding available for the desired service.  DDD utilizes the CARE Assessment to determine whether the person meets eligibility requirements for a specific service.

Those who are currently receiving a funded service through DDD are referred to as the “Paid Services Caseload.”  Those who do not receive a funded service through our division, either due to lack of funding, not meeting eligibility requirements for a specific service, or not desiring paid services at the present time are referred to as the “No Paid Services Caseload.”  The Paid Services Caseload plus the No Paid Services Caseload comprise the Total DDD Caseload.

Also, the “No Paid Services Caseload” clients means that they are not receiving a paid service through DDD.  Many of the DDD clients do receive services from other programs within DSHS.  DDD does not keep track of nor have awareness of other services within DSHS that the DDD clients may be receiving.

Services Received by DD Clients in FY 2008

programs which DDD clients access