“Things I Mean to Know”

I was recently listening to the Podcast “This American Life” and was struck by the very question that I keep asking of advocates with regards to intellectual disabilities.   We are told over and over again that “evidence shows” yet have these advocates really looked at the evidence or are they just taking on faith what they have heard and have believed it?

Questions asked are “how do we know it’s true?”, “what is the proof of it?” “how much have you accepted without evidence?”

“Sometimes there’s a thing that you think you know, even though, right in front of you, staring you in the face, is clear evidence to the contrary.”  There are also the issues of denial  and deceit at play when censorship of opinions and experiences are practiced.

I’m keeping this here as a reminder to myself and others that things may not always be as they seem to be.  We cannot take things for granted and assume.  Just because someone says something and has an air of authority, it does not mean they are right, just, ethical or moral.

 

From AADMD – Virtual Grand Rounds

AADMD Presents:
We would like to extend a special invitation to attend our next Interprofessional Virtual Grand Rounds: Impact of a Medically Complex Patient Care Model on Cost and Utilization among Young Adults with Special Health Care Needs on October 2, 2018 8:00 PM EDT at:  https://register.gotowebinar.com/register/577645319591903491
 
Not only will you have the chance to participate live in these engaging sessions, but you will also be able to access these recordings in a Virtual Grand Rounds library on the AADMD YouTube channel for viewing whenever you would like. The videos can be found at: https://www.youtube.com/playlist?list=PLdZNR08Nu733MlVd5TiC-TQbeN0BeMuD1 
 
Please disseminate this information to anyone who you think would benefit.
 

This session will be led by Dr. Tomas Davis, a 2008 graduate from Drexel University College of Medicine in Philadelphia, PA. He completed his combined residency in med-peds at Geisinger in 2012. He served as med-peds co-chief during his fourth year. He is currently director of the comprehensive care clinic, designed to care for adolescents and young adults with complex medical illness that start in childhood and will follow them into adulthood. The clinic operates as a combination of both the medical home and complex care delivery models. He has received a grant from the Picker Institute, “Employing a Patient-Centered Approach to Develop a Medical Passport to Improve Transition and Educate Health Care Providers.” The information obtained from this grant has been presented at both national and international conferences and has been incorporated into the comprehensive care clinic. Dr. Davis is also active in the Health Care Transition Research Consortium leadership group looking at improving transitions of care nationally and internationally. He has worked on multiple projects on transitions and continues to look for new and exciting projects for residents to participate in. Most recently, he has received funding through GHP Quality Fund to be clinical lead for the Medically Complex Pediatric Patient Care Model redesign looking to combine both clinical enterprise and health information technology to improve care for the most medically complex pediatric patients. When not in the hospital he enjoys spending time with his daughter and wife, watching Philadelphia sport teams, cooking, and exploring the area.  

Presentation description:

Adolescents and young adults with special care and health needs in the United States–many of whom have Medicaid coverage–at the transition phase between pediatric and adult care often experience critical care gaps. To address this challenge, a new model referred to as Comprehensive Care Clinic (CCC) has been developed and implemented by Geisinger Health System since 2012. CCC comprises a care team, consisting of a generalist physician, pharmacist, and a nurse case manager, that develops and closely follows a coordinated care plan. This presentation examines the CCC impact on total cost of care and utilization by analyzing Geisinger Health Plan claims data obtained from 83 Medicaid patients enrolled in CCC.   The results indicate that CCC enrollment was associated with a 28% reduction in per-member-per-month total cost, driven by reductions in hospitalization and emergency department visits. This finding suggests a clinical redesign focused on adolescent and young adults with complex care needs can potentially reduce total cost and acute care utilization among such patients.  Also, he will discuss how this can be translated to other home institutes. 

 
Please register for Interprofessional Virtual Grand Rounds using the link above. After registering, you will receive a confirmation email containing information about joining the webinar.
Not sure what AADMD is or would like to learn more? Visit us at www.AADMD.org for more information and to become a member!

#choicefirst

Thank you to the Wisconsin delegation of Congressman Glenn Grothman and Congressman James Sensenbrenner for understanding the issues that are faced by many people with intellectual and developmental disabilities.

ccc_logo_houses

Thank you to those working with Coalition for Community Choice (#ChoiceFirst) who understand that our choices matter and we may not all choose the same thing.  We may even make different choices for different situations in our own lives.

Please spread #ChoiceFirst – it can save lives!

CCC Principles

Clarity!

 

I am making a proposal that Washington State should establish a “High Cost Review Committee” with representatives from Developmental Disabilities Administration,  Aging and Long Term Care Administration, Behavioral Health, and other representatives from various professional disciplines, community advocacy groups and families, that are critical to the care of this population.

Listening to the discussion that took place at the Joint Legislative Executive Committee on Aging and Disability (November 30, 2017) I was struck by the different approach to fiscal discussions for long term care settings compared to residential settings for people with intellectual and developmental disabilities.

I was impressed with the information shared.  The presenters were clear in the assessment of needs and costs and that those individuals with higher support needs have a higher cost of care.  They take this information into account when making decisions for aging clients and also those with dementia.  The presentation for Adult Family Homes indicated there are 17 different acuity levels for residents with correpsonding reimbursement rates.

One Senator asked for Clarity – clear ideas of the finances needed to try to meet the service need.  Without a clear idea of the cost they are unable to understand what is needed.

I question why this approach is not used when making fiscal decisions for residential care within the Developmental Disabilities Administration.  The data regarding acuity of care and costs is available to use but is not shared with those making budget decisions.  Without an understanding of the number of residents in each level of acuity (Levels 1-6), the legislators are not able to make an informed decision.

Last year I was accused by one state Senator  (Senator K.) of fabricating costs attributed to my son who lives in supported living when I shared those costs with another Senator (Senator C.).  All I did was forward the DDA documents I receive to Senator C- if there was fabrication it was not on my part.  Senator K stated that the data was irrelevant to the situation (cost of care of high support resident – seems very relevant to me)

Senator K wrote:  “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 in many different clients and settings, 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.”

Using the AVERAGE cost of care is one reason that there is a crisis.  It obviosly does not work to use this average for the budget purpose of the cost of care for residents with high support needs.  Doing so will cause extreme underfunding of appropriate and mandated services.  Doing so is neglect.  My response to Senator K is linked here.

New Hampshire understands this fact about cost of care.  They realized that in order to provide effective community based services to all individuals with IDD- including those with significant medical, behavioral and psychiatric needs, they needed a collective of responsible parties – policy makers, agea agencies, service providers, families and communities to play a role.  The NH High cost Review Committee was formed in efforts to sustain and improve services for New Hampshire’s most vulnerable citizens.  This report from the High Cost Review Committee has critical information on providing appropriate and cost-effective services for this population.

The Human Services Research Institute (HSRI) compiled information regarding the percent of the waiver budget for states was used by the 5% most expensive residents.  This report was done in 2009 and they had hoped to update.  I inquired into an updated version and unfortunately one has not been produced.

In addition to asking for an updated report of the 5% most expensive service users, I shared my concern about using “average” cost of care with the polcy analyst.

” My concerns are that the “average” cost of all people with IDD is used when looking at what it would cost to move people out of the ICF into a community home. Typically, the people in the ICF are those with higher support needs (hence higher cost) in the community and if one uses the average cost for community they will greatly underestimate the actual cost and the funding will not be available to safely care for the population. ”

This is the reply that I received from the HSRI Policy Analyst –

Your concern about the average cost of serving people is a valid one, as an average often masks outliers that can be important to consider.

 

HSRI 5 percent

 

 

Senator K and others in the legislature who believe the “average” cost of care is the number to use when trying to clarify budget needs – please ask for more accurate data from DSHS and DDA regarding at least the average cost of care for each assessed level of service.  That information would be much more useful in forcasting cost and services than the overall average.

 

 

 

 

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

 

“Things I Mean to Know” (Sheltered Workshops and Supported Employment)

I was recently listening to the Podcast “This American Life” and was struck by the very question that I keep asking of advocates with regards to intellectual disabilities.   We are told over and over again that “evidence shows” yet have these advocates really looked at the evidence or are they just taking on faith what they have heard and have believed it?

Questions asked are “how do we know it’s true?”, “what is the proof of it?” “how much have you accepted without evidence?”

“Sometimes there’s a thing that you think you know, even though, right in front of you, staring you in the face, is clear evidence to the contrary.”  There are also the issues of denial  and deceit at play when censorship of opinions and experiences are practiced.

The most recent issue with lack of evidence is in the recommendation of the Seattle Commission for People with Disabilities (PwD Commission) to immediately eliminate the special certificates for employees with disabilities who would earn a sub-minimum wage.  Supposedly, the commission did 4 months of “intensive research” but they have not been able to provide any documentation of their research other than  opinion pieces, articles that actually oppose rapid elimination of the certificates or outdated research.  (Below this post are links to the documents the PwD Commission provided as their research into the issues of sub-minimum wage).  They have not been able to address the issues I have asked with regards to how this recommendation will affect other aspects of the people’s lives.  Apparently,  from the answer I received, the other aspects are irrelevant in this decision.

I wrote a letter to the Office of Labor Standards with my concerns about the recommendation and then again about the lack of evidence that was provided by the PwD Commission in making this recommendation (  letter to Ms. Bull in Office of Labor Standards regarding sub-minimum wage August 2017, non-evidence letter to K. Bull of OLS – November 2017)

One position paper submitted by APSE was used as evidence.  It is very interesting that in reading this position paper and looking up the citations,  the so-called evidence is not there.   They seem totally unaware of the significant limitations written by the author (Cimera) and only use part of the conclusion as the evidence.   (APSE is the Association of People Supporting Employment First –  Subminimum Wage Research Documents from PwD Commission)

Need to keep the findings in context:

  1. Did employee begin work immediately upon enrollment (tends to occur in sheltered workshops) or was there a long process to being employed (more likely in community employment)?
  2. The number of hours worked in each setting is unknown. Sheltered workshop employees by be “on the job” of physically present for 40 hours a week, there may be hours of down time when the employee is not actually working.  Also, by definition, sheltered workshops are continually staffed (this also helps with supports during “down time”)
  3. Community supported employees may not need (or may need) job coaches on site with them and therefore the costs are not influenced as much by the hours worked. Not knowing how many hours were worked and what percentage of those hours was staffed by a job coach, Given the number of hours worked by the employees and the amount of job support needed is unknown there is no possible way to make a comparison of the cumulative cost to that of a sheltered workshop.
  4. There is the issue of “skimming” – that is that even though the participants in this study were classified as having the same level of disability (“most significant”) there is no assurance that the level of limitations was identical.
  5. Given that it is impossible to quantify every variable that could affect cost-effectiveness, let alone find sets of supported and sheltered employees who have identical abilities, every study that attempts to compared sheltered and supported employees might be comparing apples and oranges” (Cimera, 2007)

My opinion is that both options are needed to best serve our population of people with disabilities and more specifically people with profound disabilities including intellectual disabilities.  There are pros and cons to each scenario and it needs to be individualized to the person as to which would be the best option.  This is what PERSON CENTERED PLANNING is about.

This is an issue that is happening all across the nation but there is no actual evidence or reliable research which supports the policies that are making sweeping changes to people’s lives.  When reviewing studies, reports and research, it is extremely important to consider the limitations in that study, the demographics and regional differences and the types of jobs that people are employed in.

Yes, there may be problems with the oversight and management of employment (as can be read about in this article – Segregated and exploited article) under the special certificates but that means we need to correct those problems so the system works as intended.  It does not mean to suddenly change to a different type of program or system that has not been documented to provide any better outcomes for a specific population.  Again, this is where is it critically important to read through the studies and understand the limitations.  The conclusions mean nothing without understanding the limitations.

My questions to the Seattle Commission for People with Disabilities regarding the recommendation to make a rapid elimination of the special certificates and the answer I received, indicate to me that this commission does not understand the full impact this recommendation will make in the lives.

My hope is that this commission does invite and pay attention to people with intellectual disabilities and their support circles.  It is critical to involve the people who will be affected by the change.  Remember “Nothing About Us, Without Us” 

 

References:

Akkerman, A., Janssen, C. G., Kef, S., & Meininger, H. P. (2016). Job Satisfaction of People With Intellectual Disabilities in Integrated and Sheltered Employment: An Exploration of the Literature. Journal of Policy and Practice in Intellectual Disabilities, 13(3), 205-216. doi:10.1111/jppi.12168
Boyd, J. M., & Davis, C. (2016). When good is no longer good enough: Transitioning to greatness. Journal of Vocational Rehabilitation, 44(3), 279-285. doi:10.3233/jvr-160798
Cimera, R. E. (2007). The Cumulative Cost-Effectiveness of Supported and Sheltered Employees With Mental Retardation. Research and Practice for Persons with Severe Disabilities, 32(4), 247-252. doi:10.2511/rpsd.32.4.247
Cimera, R. E. (2010). Supported Employment’s Cost-Efficiency to Taxpayers: 2002 to 2007. Research and Practice for Persons with Severe Disabilities, 34(2), 13-20. doi:10.2511/rpsd.34.2.13
Cimera, R. E. (2016). A comparison of the cost-ineffectiveness of supported employment versus sheltered work services by state and demographics of program participants. Journal of Vocational Rehabilitation, 45(3), 281-294. doi:10.3233/jvr-160829
Cimera, R. E., Avellone, L., & Feldman-Sparber, C. (2015). An investigation of the outcomes achieved by individuals with intellectual disabilities and mental illnesses. Journal of Vocational Rehabilitation, 43(2), 129-135. doi:10.3233/jvr-150762
Cimera. (n.d.). The percentage of supported employees with significant disabilities who would earn more in sheltered workshops.

 

 

Elimination of Sub-minimum wage in Seattle

The Seattle Commission for People with disAbilities  has made a recommendation to the Seattle City Council to eliminate certificates which enable employers to pay people with specific disabilities a commensurate wage.  I know that there are discussions all across the country that are looking at issues of employment and wages for people with disabilities.

This is a quick update on this very heated discussion.  From what I can assume by the articles that I read and the correspondence I have had with at least two of the commissioners regarding this issue via Facebook,  there has been little research or collaboration with those in our community who may be, now or in the future, affected by this proposal.

Attempts to offer insight, requests for research, transition plans and funding plans have been ignored and people who expressed concerns have been rudely and aggressively mistreated by at least one of the commissioners.

Seattle Commission for people with disabiltiies Shaun Bickley and Cindi Laws

Below is the first letter that I submitted on the Facebook page.  This led to the Facebook page administrator blocking me from further comments or reacting to any posts – and this post was removed.

I am the parent and guardian of a young adult with significant intellectual/developmental and mental health disabilities – all of a degenerative nature and I network with many other families, caregivers, guardians and people with IDD who totally disagree with the assumptions that you and others are making about those with disabilities.

Yes, the members of the commission may have disabilities but is the specific population of those with significant intellectual/developmental disabilities represented?  The population which identifies as disabled is extremely heterogeneous and we need to have choices available to ensure that all have a chance and opportunity to work. We are all very concerned regarding this issues. For many of these people who work under these certificates, it’s not about making a living wage – it’s about having a job and being a member of the community, participating, sharing experiences and having daily goals and activities – basically adding meaning to their lives. 


Unfortunately, my son and others who experience some of the same types of issues he does, are not able to articulate their ideas, attend meetings, and speak in coherent sentences – even with the help of assistive technology, and so their voices are not heard. 


You do not speak for them – in fact, it is quite the opposite because you deny the people who know, love and understand them, the opportunity to provide their ideas and choices. These people are their friends, families, guardians, caregivers, coaches, case managers, co-workers. These are the people who are all better equipped to fill in and be a proxy for their voices. 


The fact that you make assumptions that you are speaking for all people with disabilities without taking into consideration those who are affected by this issue is an act of discrimination and devaluation of their personhood. 


We need these certificates to ensure choice – remember the saying “nothing about us, without us” – Please take it to heart!

Mr. Shaun Bickley, one of the commissioners, took offense with my letter, stating “”nothing about us, without us” refers to disabled people, not to parents, siblings, neighbors,  co-workers and other allies”.  He wrote that they (the commission) were all disabled and therefore can speak for all people with disabilities – whereas, guardians’ concerns are only self-serving.  He wrote that all people, even if they can just move one muscle, can make their choices known – regardless if others understand them or not.  (I am very confused by this since if others do not understand, how are their choices known?)

In looking at the members of the commission I noticed that several are lawyers, a few have PhDs and several others have a variety of advanced college degrees, one is a filmmaker and an artist,  one is a medical doctor  – I’m curious which one has an intellectual/developmental disability?  This is the question that got me blocked from the Facebook page as it was seen as using “degrading language and making people feel unsafe.”

More to come – letters have been sent to The Seattle Commission for People with Disabilities, the Mayor’s office, the Office of Labor Standards and to each member on the Seattle City Council.