DD Advocates need to come clean with accurate information!

It is critical to drop the adherence to the ideology that “community” living is best and less costly than living in an ICF/DD for many of our high needs citizens with developmental disabilities.  This dogmatic approach is hurting everyone of us – disabled or not.  A continuum of care model takes variety into consideration in addition to cost effectiveness, safety and quality.  A continuum of care model is what needs to be looked at – a model which benefits everyone – disabled or not.

Please see this link for information Come Clean.  This roughly outlines some of these issues.  Resources and accurate data taken from DDD and DSHS management sources.

 

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

Formation of Washington State Task Force to Look at DDD Services

Attached below is my letter to Don Clintsman, Assistant Director, Division of Developmental Disabilities.  He had responded to a letter which I had written to MaryAnne Lindeblad, Assistant Secretary, Aging and Disabilities Service Administration, inquiring about the formation of the Task Force and the importance for a balanced perspective of the participants.

Dear Mr. Clintsman,

 

Thank you for responding to my letter to Ms. Lindebland.  It is hopeful to hear that the The Department of Social and Health Services and the Department of Developmental Disabilities finally understand the concept of and have adopted the term “continuum of care.”

 

We, as grassroots disability advocates have always stressed the importance of the continuum of care, realizing that each person needs to be looked at individually and their needs met according to their assessed support needs.  The only way to accomplish this goal and also accomplish it within a reasonable budget is to continue to offer the full continuum of care to all – regardless of their age group.

 

Once one realizes the critical importance of this continuum, I’m hoping that the budget figures and reports will more accurately be reported to reflect the true cost of care – especially for our most vulnerable citizens and those with high acuity levels in several areas. 

 

It has never been disputed that citizens with high acuity can be accommodated in neighborhood communities and it’s wonderful that this arrangement can work for many.  It is neither realistic nor safe to consider this the best option or even a viable option for many of our citizens who currently reside in the state operated residential communities or those who have requested admittance but have been denied access to these communities. 

 

Given the many constraints of resources – not only dollars – but people and housing, it only makes economic sense to utilize the concept of “scale of economies.”  This concept utilizes the fact that being able to serve more people with the same type of support needs and sharing some of those services within a community actually saves dollars.  Within these communities, the residents also receive their comprehensive health care – minimizing many transportation costs, emergency back up costs, and extra personnel costs used to transport residents to other appointments just to highlight a few examples of costs which are often forgotten.   The residents have much better preventative care and follow-up care, are not traumatized by being “taxied” around town for various appointments such as lab draws, xrays, dental exams, eyeglass fittings, etc. 

 

I will highlight one example of a woman in her mid 30’s.  She lives in a supported living arrangement, has cancer and many other health related problems.  She came through the department in which I work to have her port-a-cath changed due to mismanagement and infection.  This is very unusual to need a port-a-cath replaced, particularly if the first one has only been in a short while.   This woman presented in surgery, unaccompanied by a guardian, unable to comprehend all that was going on.  She had missed many of her scheduled doctor’s appointments related to not only her cancer treatment but preventative and follow-up care for other health issues.  It is stories such as this that I see as totally preventable when a person lives in a residential community with comprehensive care.  What budget does the cost of her care due to mismanagement of her health problems get attributed to?  This doesn’t even take into the account the effects of pain and suffering to this woman. 

 

I know from  looking at many sources which DDD and DSHS provide regarding costs of care, services requested and provided and even the cost of care for the 30 highest cost DDD residents  that you provided to me, the figures that have been used for cost comparison are extremely inaccurate with missing costs, cost shifting and data input errors.    Data that was used for these cost comparison reports was taken from reports with many inaccuracies – therefore, the data pulled is essentially useless if getting an accurate assessment of the cost was the goal.   

 

 

In addition to the issues of safety for our residents, we must also look at safety and training for the caregivers.  I will be looking into the L&I cost of “on the job injuries” to caregivers and charting from which type of facility the highest percentages originate from. 

 

Again, hearing that The Department has now adopted and supports a continuum of care, maybe we can really move forward with innovative systems which are cost effective to safely support our most vulnerable citizens. 

 

I will be following up this letter with data which supports the need for a continuum of care.  In addition to having accurate data, it is critical for some very prominent advocacy groups to realize that denying our citizens with the support needs which are available in the residential communities is not only denying these people their human and civil rights but will weaken the whole system by putting an undue financial burden on our state.  These actions which they advocate for will actually minimize the services to many who have less acute support needs.  The dollar can only be stretched so far without something giving.

 

 If one were to follow their example of “everyone needs to live in the community” I’m afraid that we will lose many of our beloved family members. 

 

Again, thank you for your follow-up letter and I will be communicating with the Task Force Members often once the committee has been decided.

Court Rejects Claims of Abuse

Finally, the courts are listening to the real experts in the care of our citizens with developmental disabilities  –  the families and guardians.

We need to maintain a continuum of care for the health and safety of ALL people with developmental disabilities.  This is a victory for those who need the very critical part of that continuum that many with skewed ideologies have been trying to eliminate.

http://www.disabilityscoop.com/2011/06/09/court-rejects-claims-institution/13294/

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper

When I read this article and see no mention of SSB 5459 in this – I realize that the bill that was so critical in my mind was of little significance to the state as a whole.  I have a hard time coming to grips with this and then wonder, if this bill was of such little significance, why didn’t legislators listen to the sensible and responsible facts that were brought to their attention and vote NO on SSB 5459?  There must be another reason that overrode responsibility, basic human and civil rights, personal choice on residence as guaranteed under the Federal Olmstead decision and the Centers for Medicaid and Medicare Services guidelines.

If anyone could enlighten me as to what deals were made which caused this bill to pass I would love to know.  Maybe if I understood what was exchanged in order for a responsible, humane and sensible person to vote yes on this bill,  I could understand why innocent people were made scapegoats for such an “insignificant” bill.

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper.

What’s the Better Deal?

Stop thisTrainwreck waiting to happen!

Please stop SSB 5459 – There is so much wrong with this bill that it will be hard to sum up in a concise and effective letter.  The critical issue is to stop this now and think about what the ramifications of such drastic changes will be if this bill is passed.

  1.  This bill is based on regurgitated false information from years past.  Senator Adam Kline continues to talk about “the 1970’s” with regards to our facilities today.  He is correct about the changes that needed to take place in 1970 but he’s far removed from the realities of the situation today and the recommendations from the experts of TODAY
  2. There are many in the community who are eligible and have requested admission to an RHC.  DDD has continually denied admission.  This is the only reason for a declining census in our RHCS.  There needs to be a survey sent out to all in the community who are eligible to inquire about their choice.  I believe you will find many who have chosen the RHC but their choice has been denied.  It is time that DDD actually supported and adhered to the Olmstead decision and respected people’s civil right to have a choice in where they want to live.  This is the very first thing that should be done before any or our RHCS are consolidated or closed.
  3. The reports that are generated by DDD are based on false information.  These need to be scrutinized.  I have researched the data and have found so many errors and flaws in the analysis of that data.  It is incredible that these reports are continued to be passed around as “fact” without anyone in the department questioning the concerns that I have raised.
  4. Rather than answering my letters regarding the fact that the “key points” are not supported by the data, DDD ignores the questions; Executives from The Arc accuse me of being “abusive” for questioning these reports.  As any person who has done research would know, it is expected to have people question your work.  When they question you, it is an opportunity to prove your point – not to call the questioner ABUSIVE.
  5. DDD reports that they have a Quality Assurance program which is up to date.  I will be sending  a synopsis of the issues I have had in researching the QA reports that should have been done, that DDD says they do, and the lack of knowledge about where they are, if they were even done and the multitude of players involved who do not communicate or know who has what report.  It’s a huge issue of “passing the buck” and nothing is getting done.  This NEEDS to be addressed before anything else can move on.  How can DDD say they have quality assurance when they don’t even have reports done, completed or available or even know who does them? DDD has not even complied with the requirements of The Roads to Community Living grant by completing the necessary surveys of the people who have participated.  The whole grant could be in danger without DDD following through with the requirements.
  6. People contacted regarding QA – still no data available – these people just keep sending emails around saying the next person has the data.  No one has it.  Players involved in this game:  (12 names which I won’t post here but sent to our House Ways and Means Committee members)  You would think that one of these people would be able to give a straight answer.  It’s time that DDD and the DDC are held accountable for their actions and lack thereof.
  7. DSHS is focusing their efforts on closing the RHCs.  The RHCS are about the only safe place for our citizens with DD.  The community homes which DDD so proudly talks about are a shambles – no safety or QA oversight, poorly trained staff with a high turnover, inadequate staffing levels and this is just the beginning.
  8. We hear about how wonderful the homes are in the community.  Just this past month I have been told by family members who have a grown brother and a 17 year old son in an Alpha Supported Living home and a SL Start home respectfully that they are not allowed to bring a visitor to the house.  What type of home is it in which as a sister or mother (or other family member) cannot even drop in to see their loved one or to bring a visitor to meet with them?  Why would they have these policies?  This is certainly not a home in which I would place my loved one. At the RHC, I can visit whenever I want, I don’t have to pre-arrange a visit, I can bring whoever I want to visit with my son.  There are no restrictions on my visitation with my own son.
  9. Rather than embarking on projects that are experimental and also on successful programs with people who are happy with those programs, it is time for DSHS and DDD to fix and bring up to standard the issues in the community.  This is where the energy and money needs to go.  These advocates talk about how they support those in the community yet their actions are contrary to that.  The problems with abuse, lack of oversight, lack of trained caregivers, and lack of services in the community will only be compounded by passing SSB 5459.

Please for the sake of not only our most vulnerable citizens who are safe and healthy in their current homes but also for all those in the community who will be hurt even more by the changes  that this bill support, DO NOT PASS SSB 5459.