Spinning (a tale)

Drop Spindle

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 it’s 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 remibursement (wages start at roughly $11-12.00/hour)

One of our seasoned State Senators wrote ” Obviously some clients need more supports 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, thier 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.

NH HCBS costs June 2015

The graphs below were generated by the data provided by Washington State Developmental Disablities Administration 2017 Caseload information.

WA State HCBS costs per setting August 2017Budget from actual costs not average

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.

Developmental Disabilities Administration 2017 Caseload Information

dshs.wa.gov/…/Final 2017 DDA Statewide Caseload Information Handout_10-13-2017.pdf

Developmental Disabilities Administration 2017 Caseload and Cost Report

 

Face the facts

Knowing that more budget cuts are coming down the line it is really time for our legislators and advocates to face the facts.  We’ve listened to the rhetoric long enough and many have come to believe what they have heard –  – but the truth has been misinterpreted too long.

When looking at costs for those with intense support needs we need to look at the costs for that population – not the average of the whole.  These costs are dramatically different.  We can all figure out very easily that when people share costs, the individual costs decrease – this is very simple to understand.  Yet, when we are talking about sharing costs for those with developmental disabilities, this simple fact is totally ignored.

I do not hear any advocates saying that someone is “too disabled” to live in the community and I also do not hear the cost of those with intense support needs who choose to live in a community setting.  So-called advocates do not want this talked about but a few of them have slipped out what their sons and daughters have cost our state to allow them the choice of community homes. Everyone should have the choice but also let’s be honest with what these choices cost – not only to the state but the individual themselves, their families and the local cities and communities.

1.  One young man was able to live in the community with the help of 19 hours of nursing care a day for 17 years.  His situation is talked about frequently to illustrate that those with high medical support needs can live in the community but the fact of his state funded 1:1 nursing care is never mentioned.

2.  One young woman lived in a group home for a couple of years until it closed.  She has lived in the intermediate care facility for about 5 years now and is getting ready to move out to a community home of her own.  Our state has spent over $150,000 sound-proofing and remodeling this home that she will live in by herself – and two staff people 24 hours a day.  She will have a male and a female staff person each of the 3 shifts 24 hours a day every day of the year.  Her staffing costs alone will be over $265,000 a year.  This does not include any other costs for her care in the community.

I understand these are two extreme examples but they are real examples of the level of care that those who live in the intermediate care facility could require if they chose to live in a community setting.  When we are talking about downsizing the ICFs we need to look realistically at the costs and they will be astronomical if we even consider safe and appropriate care as a human right.

These are the types of costs that we need to look at when hard choices are made regarding state funds for where those funds will be applied.  I will argue that denying those who choose the ICF/ID as their home not only denies that person but costs everyone in our state.  The costs are not only dollar amounts but costs of quality of life – quality of life for the person, their family and our communities.

It’s time to face the facts and get real about the situation.  Let’s stop the pretending – the pretending is certainly not beneficial to those we are trying to help.

Cost and Community – Part 1

I have not been involved in politics for very long and it has been a steep learning curve for me.  Prior to my son diving into prolonged crisis I had contacted The Arc of King County for Parent to Parent and other ideas.  There was never a parent to parent “match” for me and the message I got from members of The Arc of King County was for me to go talk to my legislators.  I felt alienated by the very group which was supposedly my advocate.

After several years of crisis after crisis, family destruction, loss of jobs and income, and near loss of life, my son was able to be stabilized in the Residential Habilitation Center (RHC) or Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID).  It was after this that I became to understand the importance of advocacy for our loved ones and I also had time to learn and research on the issue.

I also realized then that The Arc was not an advocate for those with high support needs and this is confirmed over and over again from families.  Most recently a family in crisis in need of a supported living arrangement called The Arc of King County and was told “we only serve higher functioning individuals” and had a “I don’t care attitude” and was very “rude.”

This is not meant to be an attack on The Arc – they have done great work for many but it also needs is noted that they do not speak for the whole community of people with intellectual disabilities and do not support the wide continuum of care which includes intensive support needs of those for whom campus type communities best serve.  I would really like to see this issue addressed seriously rather than being dismissed and disrespected without even listening to the real issues.

I scoured original resources, requested data from state agencies through public record requests, studied many reports and research projects and gathered some great information which could really benefit many.  The problem is that this information has not been shared through the “politically correct” channels and is negated, tossed aside and discounted.  It’s a shame because if people just took the time to look at it and ask questions, they would  learn something new and put information to good use.  This knowledge could help alleviate more crisis.

Reading research articles by reputable authors and published in major journals, I have also seen that research does not address the issues of those with the highest support needs.  The research focuses on those who are higher functioning and what happens is this information is then generalized to the population as a whole.  This is a very dangerous generalization which will backfire.

The two major issues are cost and community and I think that almost all people involved agree that these are critical issues. There are major flaws in how these issues are reported and discussed and this is where there is a great divide.

In upcoming posts I will address the issues of “cost” and “community” and give references to data and research.  My hope is that the logic will come through and people will begin to question the rhetoric that just does not add up and make sense.