Tag Archives: continuum of care

NO Safety Net? It’s a possibility unless we make our voices heard!

We need a supportive coalition to prevent future cuts to our most vulnerable citizens. Our Governor and legislators need to hear from us, the people. We are the ones living the experience of crisis after crisis with a bare bones safety net. What happens when there is NO safety net?

Please uphold our 1999 US Supreme Court Decision Olmstead and the US DD Act by supporting a continuum of care service model. You can sign this petition to pass the message on to our Governor, Governor-to-be and legislators. We need to uphold our own State Constitution, Article 13 which states institutions need to be fostered and supported by the state.

The citizens of our state did win a major battle in the McCleary v State lawsuit.  This looks at the same part of the Washington State Constitution which we look at for care of our most vulnerable who need the high intense supports provided at our Residential Habilitation Centers (RHCs) to maintain their health and safety.  The issue is that there was a lawsuit to provide funding for education and there has not been a lawsuit against our state to “foster and support” the care of those in the RHC.  (I’m not advocating for a lawsuit – only for our State to do what is right and just and as is outlined in our Constitution)

Our state has no new revenue sources to fund the education which needs to be provided.  Without a source of revenue – what do you think will happen?  My guess is that our legislators and Governor will again look at our most vulnerable and again pull away their life sustaining support.  We can not let this happen.  We need to find other places which have at least a morsel of meat on the bones or provide a revenue source.

http://www.thepetitionsite.com/853/982/813/i-support-a-continuum-of-care-service-model/?cid=FB_Share

Washington State Institute for Public Policy

I have written a letter to the Washington State institute for Public Policy (WSIPP).  This institute was created by the Washington Legislature in 1983 to carry out practical, non-partisan research - at legislative direction - on issues of importance to Washington State.  http://www.wsipp.wa.gov/

I believe that the issues related to safe, quality and cost effective care for our citizens with developmental disabilities needs to be revisited by this institution.  Please see my letter to them which highlights some of the areas of concern.

Letter to WSIPP Board of Directors

Letter to Don Clintsman, Assistant Director, Division of Developmental Disabilities – Please answer these question

Letter to The Arc Chapters in Washington

I wrote this letter and sent to all Executive Directors of all Arc Chapters in Washington State.  I believe it is critical to support a continuum of care and hope that our chapters will be  innovative and come to understand the importance of this model.

We have some real work to do – given that one of the MAJOR concerns regarding safe and quality care is the lack of Direct Support Professionals.  We, as advocates, must push for training, increased wages to promote recruitment and retention of staff and support for staff themselves.  Having adequate staff is one of the cornerstones of safe care for our loved ones.

I attached the following documents to each email in hopes that the Executive Directors will decide to share the information and  join in support of a continuum of care.

Consortium for Citizens with Disabilities Letter

recruit and retain DSPs

Dear Advocates for DD

 

Dear Arc Executive Directors,

I am writing a letter to all of you in the State of Washington in hopes of coming together in support of a continuum of care for our citizens.  I believe that the division that has been created is only hurting those who we all advocate for.  Please join in supporting advocacy for a continuum of care model for our community members. 

A Continuum of Care model is Person Centered, upholds the U.S. Supreme Court Decision Olmstead and the U.S. DD Act.  This model serves to meet the needs of the individual with the needed supports to enable that person to live in the least restrictive environment for that person.  This is an individual decision which can only be made by those who know the person – hence, Person Centered Care. 

Please see the attachments regarding issues pertaining to these areas.  I do hope that our Arc Chapters in Washington may be able to take an innovative lead in the nation and realize supporting a Continuum of Care Model serves our citizens best.

Please feel free to distribute the material to interested parties.  It is critical, particularly in these times of more budget cuts, that our advocacy is united and best serves those we care about.

Thank you,

Cheryl Felak, RN, BSN
Disability Advocate – Parent
Because We Care – Beyond Inclusion
Seattle, WA

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.