I am a hand spinner and greatly enjoy the various fibers in my hands, spinning onto a drop spindle to make yarn. From the spindle, the yarn is wound onto a device from which a skein is made. The yarn becomes a bit stretched on the device and when removed, the yarn shrinks to its final length. The skeins are labeled by their yardage and so this natural shrinkage needs to be taken into consideration. The spinner needs to know how much the yarn will shrink in order to accurately label the yardage so that the knitter knows how much to purchase in order to make and finish the project.
There are some agencies, advocates, and legislators who spin a story regarding the support, care needs, costs of care, residential setting choice and person-centered planning for many in our community who live with intellectual and developmental disabilities.
The problem we face is a matter of underestimating costs rather than overestimating. Much of the problem is that the legislators use “averages” of the whole for budget forecast rather than “averages” for a specific population.
Last year I provided legislators with the costs of care for my son who resides in supported living. He had been a resident of the intermediate care facility (ICF) and only moved to supported living due to issues of medical/nursing care that could not be met at the ICF. Last year, his cost in the community was higher than the cost of care in the ICF. This year his costs will be higher still due to needing more 1:1 support and the fact that he lives in Seattle and the agency (not state funds) must pay the caregivers the Seattle minimum wage ($15.00/hour) rather than the contracted state reimbursement (wages start at roughly $11-12.00/hour)
One of our seasoned State Senators wrote ” Obviously some clients need more support than others. Unfortunately, the numbers you are using are misleading and imply that community care services are more expensive than RHC care. Since the state pays for both, we have significant experience with many different client and settings, and the various elements of costs. We have used averages for our proposals because that is the most accurate way to account for a group of clients and settings. On average, community care is much less costly than RHC care.
As follow up, this senator then wrote “The cost of community care is lower than the cost of RHC care. That is known by our budget writers because we pay the bills. Individuals have variances, but the OVERALL cost is lower. We have had hundreds of RHC clients transition to community care so we have real experience and real data on this. By providing your personal experience to Senator you have convinced her that it applies to the overall cost of care, and that is not accurate or factual. I hope you will help me correct the record. “
I did follow up with a response as to why the costs I reported were very important to take into consideration since my son was representative of the type of resident in the ICF that may desire to move to a community home with supported living. I wrote ” The issue of providing data for my son is extremely relevant to this issue, it is factual and accurate. I provided the exact documents that were provided to me by DDA so if for some reason they are inaccurate, that is an issue that needs to be addressed with DDA. I would be more than glad to provide you with the same information.” I did not hear back from her.
With the upcoming legislative season just around the corner, this annual issue will again come to the surface. We need not only affordable housing but trained caregivers for these people with higher support needs. We need to look at the cost of care for this specific population – not the OVERALL AVERAGE as the senator above thinks is more accurate. I totally disagree with her assessment and understanding of the care needed and cost to provide this care.
New Hampshire has developed a High-Cost Review Committee which looked specifically at those with higher support needs, their Support Intensity Scale score and the costs of care. Below is a graph documenting some of the costs attributed to people in different residential settings in New Hampshire.
The graphs below were generated by the data provided by Washington State Developmental Disabilities Administration 2017 Caseload information.
If our legislators continue to use the OVERALL AVERAGE cost as the measure for cost of care, we will continue dive into deeper crisis.
In order to best serve our community members and start to crawl out this hole, we need to fund appropriately. That means that we need to look at the different types of support needs and numbers of people in those categories. This information is readily available through the Developmental Disabilities Administration – one just needs to ask for the right information and use it.