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.