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

Please Listen to Us!

I am attaching some very interesting documents.  What I would love to know is if the Department of Social and Health Services and The Department of Developmental Disabilities are listening to the people they are serving.

To me, from looking at the Joint Legislative Audit and Review Committee (JLARC) DDD Assessment Report dated January 31, 2009, it clearly outlines the numbers of people and the programs and services requested.

JLARC Final Report 013109 DDD assessment

This is what I find very interesting and confusing:

Program Requests:

ICF/MR – 20

Roads to Community Living – 1

Service Requests:

RHC or ICF/DD services – 40

Roads to Community Living – 1

Looking at what was requested by the people, it is clear that the people are requesting the ICF/DD services much more than the Roads to Community Living Services.  Why then, is the Department downsizing the ICF/DD’s and putting thousands of dollars into the RCL program?  Why is the State of Washington spending over $250,000 on a “Family Mentoring Project” for the Roads to Community Living when it is clear that the people involved are not even asking for this? Is this being a responsible steward of our public funds? Is this being cost effective?

It is time to listen to those who really receive the services and programs – not those who masquarade as their advocates.  The people have clearly spoken and they are asking for the services in the ICF/DD’s.

Please Listen to Them!

Number of Programs which DDD Clients Access:

Number of progrmas which DDD clients access

Other DSHS Services Received by DDD Clients:

Services Received by DD Clients in FY 2008

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.

Washington State, DSHS and DDD discriminate against our youth

With the passage of a new law which our Governor, DSHS Secretary and some prominent groups which masquerade as disability advocates celebrate as “historic,” they are certainly correct.  The reason that this law is “historic” is because it discriminates against our most vulnerable citizens and in particular our youth with complex needs. 

 

 I must admit that I am still stunned by the passage of SSB 5459.  The process with which this bill was passed, the rhetoric which was continually pushed and the total dismissal of facts derived from data from the Department of Social and Health Services and The Developmental Disabilities Division’s own reports all pointed to a pre-planned action to dismantle the service system which supports a continuum of care for our citizens with disabilities. 

 

There are so many issues relating to this bill which are questionable from a legal standpoint in addition to total violation of Federal Statutes as determined by The Olmstead Decision.  Yet, for some reason, Governor Gregoire and DSHS Secretary Susan Dreyfus are celebrating what many of us consider one of the darkest days in disability advocacy. 

 

SSB 5459 prohibits admission of children under age 16 to a Residential Habilitation Center (RHC) for people with developmental disabilities and limits RHC admissions of youth, age 16-21, to short-term respite or crisis care.  Both of these two age groups are greatly discriminated against in this bill.  The civil rights of these groups are being singled out and denied.  This is a travesty – not only for these children but for their families and our communities as a whole. 

 

What we need to focus on are the needed supports for our citizens.  Prohibiting one group, based solely on age, even though they may require the needed supports that are provided in the RHC is denying these citizens their legal and civil rights.  DSHS states that the children should be living with their families and in their communities.  Yes, that is ideal but what DSHS and DDD are failing to realize is that there is a continuum of needs and this continuum goes across all age ranges.  For some, living in a community home or family home is not safe due to the limited supports available.

 

Ms. Dreyfus and many others, speak about the residents in the RHCs as if most are elderly, have lived there most of their lives and that the families and guardians are fearful and unaware of the services in the community.  Ms. Dreyfus is very misguided in her understanding of this. 

 

In fact, there are many newer and younger residents who have been admitted to the RHCs in the past years.  These families have chosen the RHC community as the better option for their children mostly because the services and community supports were not adequate or safe for their children.  The RHC has saved the lives of many of these youth and strengthened their families by providing comprehensive, safe and healthy care to their loved ones. 

 

I recently asked Ms. Dreyfus what would happen to these children under 16 who could not be safely cared for in a community residential home or family home.  Her response to me was that the families will always have the choice of an RHC but they will have to go out of state.  I ask, is that really a CHOICE?  From my experience and others, the other choice that DDD would offer is to have the police take our loved one with a developmental disability to jail.  Why are Washington State, DSHS and DDD refusing to allow our eligible youth full access to the needed supports and services which they are legally, by Federal Statutes, entitled to?

 

Somebody from The Arc, please explain this to me!

I’m very curious as to why a Disability Advocacy Group would oppose this legislation.  Could someone from The Arc please explain the position as to why the agency opposes this?

 

From what I read, this legislation upholds the civil rights and choices of the individual – isn’t that what we want?

 

I’m extremely confused by the opposition to H.R. 2032

 

 

(This notice is from The Arc – I do not endorse this nor do many who fight for the civil rights of our citizens with disabilities)

 

Civil Rights

Bill Name

Number of Sponsors

Position

H.R. 2032 – To protect the interests of each resident of intermediate care facilities for the mentally retarded in class action lawsuits by federally-funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident’s facility. 31 (15 R, 16 D) We OPPOSE this legislation

 

 

http://www.capwiz.com/thearc/issues/bills/

DD Coalition

Check out this new group:

DD Coalition  

dd-coalition@googlegroups.com

Developmental Disabilities Advocacy Coalition for Washington State. This group advocates for a
continuum of care for our citizens with DD.

This includes person-centered care
which focuses on quality of life issues, health, safety and community for our
loved ones.

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/