SAIL – Self Advocates in Leadership

SAIL headerWe hear much about Self-Advocacy and there are many trainings out there for people to learn to become self-advocates.  This is part of becoming more independent and able to make choices.  Yet, these trained self-advocates are only a minor part of the population of people with intellectual and developmental disabilities.

The agenda of many of these self-advocacy organizations may actually be against services and choices that many of their peers would advocate for.  The problem is that the peers who are not involved in these self-advocacy trainings (for a variety of reasons) are not able to communicate thier needs and choices in a typical manner. Therefore, the majority of people with intellectual and developmental disabilities are not represented by these self-advocacy groups.

 

Sail 2018 legislative agenda

When trained self-advocates voice their agendas and state that this is what people with IDD advocate for, they mislead our legislators and policy makers.

Again, it is important to understand the disability of intellectual AND developmental disabilities – by the very nature of the disability the people affected by it are, in most cases, unable to communicate their needs and choices to those who do not know them.  The people with IDD may not even be aware of or care about the issues that the trained-self advocates choose to concentrate on.

Yesterday I decided to take my son to a SAIL (Self Advocates in Leadership) meeting in Seattle.  My son is aware that I go to our state capital and communicate with people in our government.  He is aware of some of the names that he hears me say and gets excited when I say I am going to meet with one the legislators he has heard of.

I told him that we were going to a meeting for people with disabilities.  I have no idea if he understood what I was even talking about because he doesn’t really consider himself “disabled” or needing any type of special adaptation or accomodation.   He knows that he’s not able to do some things that his siblings do – such as drive  – but he’s totally fine with that and if you asked him if he wanted to learn to drive he would crack up laughing.   My son accepts how he is and is happy.  He has been disabled his whole life and his reality is that he does things differently than his typical siblings.  He is aware that his siblings do things that he doesn’t do  – but that’s totally okay with him becuase he is able to do the things that are important to him.  In that respect, they are all the same.    He is extremely happy with his life!

So the topics and discussions at the SAIL meeting were of absolutely no interest to him. Due to the length of the meeting and total lack of interest on my son’s part, we did leave the meeting early since it was also clear that his noise level and interest in other things besides what was being discussed were extremely distracting to at least one of the speakers.

One speaker, who happens to be on the Seattle Commission for People with Disabilities, appeared very disturbed by my son.  The speaker had to stop and complain several times to one of the meeting co-chairs about the distractions and even said that he could not talk with such distractions.  After about the 4th time this speaker started to talk it was very clear that he was getting agitated by my son’s noise but the co-chair told him to just keep talking and not to worry about the “distraction” (my son’s noise)

When my son kept trying to look at his You-tube videos or listen to Pandora or ask Siri about various people he knows, he would either get very excited and laugh or get angry with me for trying to encourage him to be quite.  He then started focusing on the time and saying “we will leave at 3 o’clock” for about 45 minutes and then we did leave at 3 PM.

It’s too bad because I think SAIL did discuss a topic that my son does have an opinion about – that of the intermediate care facility.  He is adament about these communities staying open and providing homes and care to those who need to live there.  This is something that he does understand from his experience – an experience that most in that room did not have – or at least not in recent years.

My son shows great concern about Fircrest (the ICF/ID in our neighborhood and where he lived for 6 years) closing.  He can name the other Residential Habiliation Centers in our state that are often in the news with regards to funding cuts and closure.  He did live at Frances Haddon Morgan Center (FHMC)for 1 year but was able to move to the RHC in our neighborhood prior to the closure of FHMC.  My son often asks “What happened to Frances Haddon?”

It is clear to me that this self-advocate meeting was meaningless to my son yet he is one of the many who need advocacy.  It’s shameful that the agency that is geared towards self-advocacy is unable to accommodate the needs and opinions of those who most need an advocate and fail to see the broad spectrum of needs and choices of the population.

I’m really curious how these self-advocacy groups work with people similar to my son and how they reach out and learn what issues are important to them?  Or is this population forgotten and silent when it comes to advocacy?

 

 

 

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 disabiltiies.  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 employement (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 critcally important to read through the studies and understand the limitations.  The conclusions mean nothing without understanding the limitations.

My questions to the Seattle Commssion 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.

 

 

Guardians are not the “bad guys”

As a parent and guardian of my young adult son with complex developmental disabilities which include an intellectual disability, I am continually made aware of the “fact” from trained self-advocates that my opinion has nothing to do with what may be best for my son and that, as a guardian, I am only self-serving.  Also, since I do not have a developmental disability myself, I have no knowledge of what it is like to live with a developmental disability – more specifically an intellectual disability.

I fully support trained self-advocates in their mission to advocate for a meaningful life experience and to shape public policies to which affect the lives of people with developmental disabilities.  I do not believe that the trained self-advocates have a full understanding of the needs and supports that people with complex, profound or intellectual disabilities (IDD) would choose.  I also do not believe that these trained self-advocates understand the issues of needing a caregiver 24 hours a day to assist with ALL aspects of daily living and how the guardian is involved in helping a person to have a meaningful life experience.

The legal guardian has a court-ordered responsibility to speak on behalf of and in the best interest of the person for whom they represent.  The guardian, together with other caretakers, and the person needing the supports work as a team and the guardian can be the spokesperson for the person with IDD.

I understand there are many people with IDD who are able to speak up and advocate for themselves and ask for what they need and that’s great. Unfortunately, just by definition of this particular disability,  only the people with the characteristics of “mild” ID may be able to live independently with minimal support and/or intermittent support during times of uncertainty.

Unless trained self-advocates are providing the day in and day out, 24 hour care needed by the people who experience  the “moderate,” “severe,” or “profound” characteristics of IDD, they have no concept of the needs, supports and choices that these people would make and have no right to speak on their behalf.  Since by definition, this population is unable to advocate for their needs and supports, the guardians, caretakers, family members, community members, healthcare providers, and friends who know the person best are the the most appropriate advocates for this population.

Denying guardians participation in advocacy on behalf of the people they care for is an act of discrimination against this population.  The slogan “Nothing about us, Without us” includes the guardians when they are speaking in the best interest of the person who they have the legal responsibility to make decisions for.

The table below clearly differentiates the severity categories in the classification of those diagnosed with intellectual disability.

clinical characteristics of Intellectual Disabilities

This discrimination is practiced by many organizations and advocates who claim they are advocating for those with disabilities.  In the response I received from Alex Clardy, Legislative Assistant for Seattle City Councilmember District 1 Lisa Herbold, it is clear they do not understand how this population communicates and the discrimination practices greatly limit the ability of the policy makers to fully understand how these issues will affect the people who work these jobs.

“The PwD Commission received no comment opposing the elimination of the subminimum wage certificates. Some people contacted Councilmember Herbold’s office concerned that people need the subminimum wage to get jobs.  Yet, no people with disabilities contacted Councilmember Herbold’s office to say so.  Since the PwD Commission, through their individual lived experiences, can speak to these issues best, Councilmember Herbold asked that I share with you excerpts from the PwD Commission letter that outlines several specific points as evidence against these concerns specifically and opposing the subminimum wage as a policy. “

( I will comment on the so-called “evidence” which the Seattle Commission for People with Disabilities (PwD Commission) provided to the City Council in another blog post)

It needs to be noted that there are no representatives with IDD on the PwD Commission and they totally disregard the guardians and the collective experience of the guardians, caretakers, friends and community members of people with IDD.  The PwD Commission is exclusionary when it comes to people with IDD.

Another group – Self Advocates in Leadership has the following items in their 2018 legislative agenda:

Sail 2018 legislative agenda

Are they suggesting that supported decision making replace guardians?  Is this logical for the people who live with severe forms of IDD?

 

 

“Fiery exchange” or “healthy discussion?”

I am sharing this blog and adding my comments here because NOS Magazine tends to censor comments that may disagree with some of their opinions.  I actually think this was a healthy discussion rather than a “fiery exchange” or terms that I have read about the conversation.

The comment that I attempted to post on NOS Magazine is below:

“I would like to respond to this article and to the IACC also with regards to the issues raised regarding the spectrum and does the diagnosis of “Autism Spectrum Disorder” really mean anything at all anymore.
After the engaging conversation between some self-advocates who identify as “autistics”, a mother of a severely affected child with autism and also guardian of her brother with autism, Director Dr. Joshua Gordon and Dr. Geraldine Dawson, it became very clear that these members realize there are some major problems with trying to reign in on the needs of this extremely heterogeneous population.
Dr. Gordon repeatedly stated comments about having a situation where we don’t know a better way to describe autism except as a spectrum and that we do not have diagnostic differences to create different labels within the spectrum.
Sam Crane then mentioned that the DSM V now uses the term “spectrum” because it also can be described as ASD with a specific characteristic. Dr. Geraldine Dawson then clarified that comment further by explaining that in the DSM V the diagnosis of ASD was meant to be used with specifiers.
• With or without accompanying intellectual impairment
• With or without accompanying language impairment
• Associated with a known medical or genetic condition or environmental factor
• Associated with another neurodevelopmental, mental, or behavioral disorder
• With catatonia
Even without the above specifiers there is also criteria within ASD that indicate 3 different severity levels based on social communication and restricted behaviors.
I would also like to add that in addition to the above information there are also many genetic syndromes which have autism included in some of the characteristics of that syndrome. The primary diagnosis for these people would be the syndrome and autism would be a secondary diagnosis.

For instance, I work with two young men about the same age who both have Fragile X syndrome. One of these men has autism and the other one doesn’t. There is a huge difference in their level of functioning based on the autism diagnosis. This person needs extensive supports (24-hour residential care) while the person without autism continues to live with his parents, has a job and is out and about in the community independently shopping and getting around on the bus.
Some of these syndromes also cause an intellectual disability and/or schizophrenia or other mental health disability. From what I have seen it is the people with a combination of various diagnoses in the DSM 5 that tend to need the most intensive support and may also be the ones who are not able to advocate for their own needs. This is why it is critical to have parent/guardians/caregivers or other advocates come to the table to speak on their behalf.

Update:  As I expected my comment was not allowed to be published on the NOS blogsite.  They practice censorship and exclusionary actions and do not tolerate “Neurodiversity” if it does not agree with their opinion.

https://iacc.hhs.gov/about-iacc/subcommittees/resources/dsm5-diagnostic-criteria.shtml#autism-spectrum-disorder

On Tuesday, a fiery exchange took place between autistic advocates and autism parents the quarterly Interagency Autism Coordinating Committee meeting about inclusion, civil rights, and the usefulness (or lack thereof) of functioning labels. IACC is a government advisory panel responsible for setting federal research priorities. Only three of the 31 IACC members are autistic themselves.…

via Autistic Advocates Clash with Autism Parents at Government Committee Meeting — NOS Magazine

Seattle Commission issues apology

Update (October 12, 2017) 

I have been asked by some commissioners to file a formal complaint with the City of Seattle regarding the abusive nature of interactions between a particular member of the Seattle Commission for People with Disabilities and community members and organizations who had a concern. 

If you or others you know felt that a member of the Seattle Commission for People with Disabilities was abusive or inappropriately criticized you in their response to you, I have been asked to send a formal complaint to both the Commission and the Office of Civil Rights – Seattle Department of Civil Rights – complaints Thank you.

 

This past week a representative from the Seattle Commission for People with Disabilities sent an apology to me for being banned from their Facebook page by one of the page administrators.

According to the representative, the page administrator took things way too far.  Because of this incident, they have instituted a temporary social media policy and reassigned roles.  The Commission will be formally adopting a policy in October.  Until that time, you and another have been “unbanned.”

The commission will, however, be moderating the page tightly and will remove posts that become “inflamed” or that attack another.  You and Friends of Fircrest, were attached because of one person’s vociferous opinion about Fircrest and his mixing his personal opinion with that of the Commission (which has not yet taken a position.)

 

I appreciate the acknowledgment of the censorship and accept the apology.  I do hope to be able to attend upcoming meetings to provide another voice to the conversation.

We need to have these conversations to build a stronger community.

Just my opinion

Caution – this is just my opinion – you may or may not agree, may be offended or not – but I own it.  You are allowed to comment, I won’t censor if you do not agree with me or if you hurt my feelings – I may tell you but I won’t censor your opinion.

When a person writes an “OPINION” essay and it is published  in a public online magazine it becomes open for discussion.  Some people who write “opinion” pieces become upset or hurt at comments that may be generated from readers who express their own opinion or have questions for the author of the original “OPINION” piece.

Isn’t  one objective of an “OPINION” essay to gather comments and hear what others may have to say?  It may be an opportunity to learn from others who may have a different opinion or to learn a different perspective from those who share the same opinion.

This issue is one that I have faced over and over again with regards to advocating for people with intellectual and developmental disabilities. Apparently there is a “right” opinion and if your opinion is different than that “right” opinion your comments may be deleted and you may be banned from further discussion.

This censorship only causes harm to those who the so-called advocates are supposedly advocating for.  Without an open discussion regarding various viewpoints people will be isolated and unable to work through problems that may exist.  Ignoring barriers to quality care and efforts to help support people in having a meaningful life only only makes the situation worse.  Unless you live in a fantasy world.