What’s all this about sub-minimum wage?

In recent years there has been a push to end sub-minimum wage jobs.  I totally agree that people should be paid a fair wage regardless if one has a disability or not.  If the person is able to do the job – with our without supports – that person should be paid at least minimum wage.  No argument from me at all on this point.

But, there is also another side of the story that is not heard (or ignored) with regards to employment and those with profound and complex multiple disabilities.  This population is often the population that if employed, is employed at a “sub-minimum”  or commensurate wage based on productivity at the job.

What is also often missed in this issue is that fact that a job is much more than a paycheck and for a specific segment of our population, this job, even though it pays sub-minimum wage, is much more than a job and money to the people who are actually involved.  We cannot lose sight of this fact in the quest “to do the right thing” without understanding the whole situation.  Most of these people do receive public benefits already due to the fact that the majority have some sort of intellectual and developmental disability.  The wages they earn are not what they live on for food and rent – although every little bit helps because what they receive from public benefits is clearly at poverty level.

Recently, Liz Plank, a video blogger and journalist,  recently posted a video titled “Divided States of Minimum Wage”   This is a great story about Collette and how she has started her own cookie business and hires other people with disabilities to work in her shop. This is a great story and one of wonderful accomplishment.

It’s a very complex issue though and it does not help that people such as Sarah Launderville,  the Executive Director of the Vermont Center for Independent Living.  Unfortunately, Ms. Launderville misinterprets the Fair Labor Standards Act (FLSA – DOL)  law and goes on to say that people get paid based on what percentage of disability the person has and goes on to say “so you’re saying you’re half a person.”

There is a public Facebook group called Disability Visibility Project

Disability Visibiilty Project - Facebook

I posted my concerns regarding this video on the DVP site and was lambasted by others.  My comments were major triggers for many people on that site and I was since blocked from the site.  While I eventually self-identified as being disabled myself (I am and have even lost a job due to asking for an ADA accommodation) I was repeatedly called out as an ableist and other nasty terms.  Even when I asked one person to read what I wrote before swearing at me and making judgments this is the comment I received:
ableist shit comment

Once labeled – there is no opportunity to clarify since every comment is twisted and misinterpreted.   I followed the commenting guidelines more closely than most of those who swore and labeled me – but since I was reported to the moderator, I was blocked from the site (as were a couple of other people who spoke some truth).  If you are interested in reading the comments, here is a link to a PDF (DVP Banned Facebook Comments March 2 2018the of the post or you can go to the Facebook page of Disability Visibility Project and read/comment there.


I have made efforts to clarify issues regarding the certificates and advocating for people who chose to work in these types of employment settings.  I have attempted to illustrate various types of obstacles that would be difficult to overcome, even with appropriate supports, for many of these same people to work in an integrated employment setting.    It’s not as simple as just paying someone minimum wage when one needs intensive supports.  There are issues of transportation, funding and training for job coach who needs to be there at all times and issues with personal care assistance (typically job coaches are not able to help with personal care giving) just to start the list.

Another huge issue is the fact that in supported employment for people with intensive support needs, the work hours usually top out at 10 hours a week.  Vermont has an average of 8 hours a week and New Hampshire has an average of 11 hours per week.  So even though the person earns minimum wage the income earned is minimal.

This then creates another major issue – if the person is now only working 8-11 hours a week, what is that person going to do the rest of the day?  While working in a “sheltered workshop” people may receive their physical therapy on site, make and eat their meals, have personal caregivers and peers on site.  There are many opportunities to engage with others and be out in the community.  When work hours are drastically cut, many people have nothing to do but sit home alone.

How do we progress and move forward?  I’ll keep advocating for my son and others and I’m sure I’ll be called more names and blocked from other sites too  – but hopefully, someone will read it and understand and help to advocate for those who are not able to advocate for themselves.


Magical Thinking

Reading the news today that Alaska has banned sub-minimum wage and the kudos of the Seattle Commission for People with Disabilities about this makes me think that these folks have magical or wishful thinking.  The illogicality of these decisions would be amusing if they were not so devastating for people and so consequently, I get very angry rather than laugh.

Robert Dinerstein, a law professor at American University and director of the school’s Disability Rights Law Clinic is quoted as saying “One approach has been to give workers a job coach, who goes to work with them during their first month on the job and helps them learn the ropes.”  I’m curious what will happen to those who need to have 1:1 support in order to be employed – do they just get to work for that one month and then lose their job?

Clearly Dinerstein has no clue about the level of supports that many who do work in sheltered workshop or those who work under a sub-minimum wage certificate need.

I have been at odds with the Seattle Commission for People with Disabilities over their recommendation that the sub-minimum wage be banned in Seattle.  I asked several times to see the research that they claimed they did regarding sub-minimum wage and finally I was given their “research” – some reports and a couple of letters – non that were specific to the issues in Seattle.  In fact, the information in the reports was very clear that in undertaking the elimination of sub-minimum wage there needs to be a transition plan in place and the transition needs to take place over several years, maybe 10 or more in some instances.    It is embarrassing as a citizen of this city that such major decisions can be made without evidence based research and opportunities for those affected to provide their input.  What happened to “Person Centered Planning” and “Nothing about us, without us?”  It appears they don’t matter to the Seattle Commission for People with Disabilities.

There are multiple reports and research with evidence based practices that can help to make a transition from sheltered workshop or sub-minimum wage to supported employment for those who chose this.  This option is not for everyone and can be very expensive and requires collaboration with many involved entities.

New Hampshire seems to be doing quite a bit of research and work to improve supported employment for residents.  There was a comprehensive plan on evidence based supported employment and a new, transparent data collection process.  There are reports issued every 6 months – this is the report for December 2016

NH employment data July 1 2016 through Dec 31 2016

Researchers from George Washington University did a case study of the transition from sheltered workshops to integrated employment in Maine.  To more fully understand the needed supports and the experiences of those involved, this report is very informative and does highlight the fact that when people leave the sheltered workshop, many work fewer hours per week and make less money than if they remained in the sheltered workshop.

Transitions - Sheltered Workshops

I do not support closure of sheltered workshops nor elimination of sub-minimum wage jobs that are allowed under the 14c certificates.  In addition to providing job support, working in a sheltered workshop can provide much more to the employee to enhance their quality of life and provide meaningful opportunities than many would be able to experience in an integrated supported employment setting.

We need to protect choice and opportunities together with person centered planning.




SAIL – (Self Advocates in Leadership) is The Arc – Washington State

I have had issues with the group SAIL – Self-Advocates in Leadership (Washington) for some time since I have witnessed this group dis-regard self-advocates who may not agree with the agenda of this group.  SAIL has typically had a representative testify every year to various committees in Olympia claiming that all institutions should be closed.   SAIL has had consistent messages that oppose person-centered planning with regards to choice of residential setting.  This group claims to represent ALL people with disabilities and fails to understand the heterogeneous make up of this population.

This past year the previous Self-Advocacy Coordinator  who actually worked for the Arc of Washington (Noah Seidel) took a position in the Washington State Developmental Disability Ombudsman Office. SAIL did not renew their non-profit status with the Washington State Secretary of State and the organization non-profit status expired February 28, 2017 and  SAIL administratively Dissolved  as of July 3, 2017.

SAil is not registered with Wash state

Facebook clipping dated August 28, 2017

The Arc – Washington State posted a Job Announcement for Self-Advocacy Coordinator on September 19, 2017

Sail Coordinator

Self-Advocacy Coordinator – The Arc – Washington State

SAIL is now run by The Arc – Washington State and the new Self-Advocacy Coordinator is Cheryl Monk.  SAIL is not an independent organization managed and lead by people with developmental disabilities as many are led to believe but is some sort of committee within The Arc- Washington State.

SAIL coordinator Cheryl Monk


There are other Self-Advocates in our state that do not promote the same agenda as the members of The Arc – SAIL.  These self-advocates have a variety of experiences and want to preserve choice for everyone.

One such self-advocate is a young man who lived at Fircrest for 6 years.  He moved to supported living during March 2016.  Even though he has a guardian, it was his choice to move and he has worked with his residential team, community, family, friends, employer, job coach and healthcare providers to make this transition a success.  The supports are critical for him to remain in supported living and the collaboration is essential to make it all work.

But he hears things and picks up on what goes on in the community.  When he hears news about Rainier or Fircrest closing, his anxiety spikes.  While at Fircrest he heard talk about this very often and he had lived at Frances Hadden Morgan Center prior to it’s closure – an experience that was traumatizing for many.  The threat of losing his home again was a real threat while he lived at Fircrest.

This is his message to our legislators – he will not be testifying as a self-advocate in front of legislative committees but his message is just as important as those who belong to The Arc – Washington



This post has offended some self-advocates.  The militant activism by some DD Self-Advocates is cause for concern.  The lack of ability to understand that others have different needs and desires, that caregivers, friends and family members of those who require intensive and extensive support needs are valuable as advocates for the people they support are major problems.

It’s very unfortunate that those self-advocates who refuse to collaborate with other advocates have a persecution complex against those who advocate for better services and the funding to support those services.  Those who advocate with and for people with IDD are not advocating from a “pro-institution” position but from a “pro-person centered planning” position.  There is no ulterior motive to pit one group against another – we’re all in this together.

Ivanova says I am wrong about The Arc

DD Ombudsman – Washington State

I have had contact with the new Office of the Developmental Disabilities Ombudsman in Washington State.  This is a critical organization for those with intellectual and developmental disabilities to be aware of regarding any concerns pertaining to their care and services received.  It is especially important for those who live in the State Operated Intermediate Care Facilities (ICFs) since these residents have no other objective advocate to review their concerns or complaints.

DD Ombuds logo

With that being said, I do have some reservations about reporting concerns to the DD Ombudsman.  The Protection & Advocacy Agency (Disability Rights Washington) which has been very vocal with their agenda of closing the ICFs, is the independent non-profit agency that was awarded the contract to administer the DD Ombudsman Program.  The Region 3 Ombudsman (Noah Sidel) was the previous Self-Advocacy Coordinator with The Arc of Washington working with Self Advocates in Leadership (SAIL) and has testified many times to legislative committees with the position that the ICFs need to be closed.

Given the history, it is very difficult to trust that the above biased agendas will not be pushed forward by the DD Ombuds office if concerns of those residing in the ICFs are reported.  I know that ICF residents and families have been reluctant to make any complaints regarding concerns out of fear their complaints will be used as “proof” that the ICF needs to be closed.   The history is that rather than looking at the problem and fixing it, the problem is used as a reason to close the ICF.

The problem is that when residents of state operated facilities make allegations the investigations are done by non-objective, state employees.  Many times these investigators are not healthcare providers and are not able to assess if the care provided met the community standard of care (medical and nursing care to be specific).  Once the Residential Care Services (under the Department of Health and Human Services) the facility administration or the State Investigative Unit have “investigated” and made their report, there is no ability to appeal or have an outside, non-DSHS employee review the allegations.

If state law were followed with regards to medical and nursing care of these residents, the oversight of the care would be provided by the Department of Health.  The management of nursing care and practice would be done by Registered Nurses – not non-nurse administrators.  Complaints regarding nursing or medical care would be reviewed by healthcare professionals not investigators who are not licensed healthcare providers.

These are systemic problems that need to be addressed.  My hope is that by bringing these critical problems to the attention of the DD Ombudsman, appropriate legislation will be written which will bring the oversight of the healthcare of residents in the ICF in compliance with the Washington State Law.

Below are some letters that describe the allegations and specific State Laws which were allegedly violated.  My intention regarding this information is so that these systemic problems are identified and corrected.  I support a full continuum of care and the ICF is a critical part of that continuum.  This information is not to be used in the agenda of closure but to address the issue of quality care and appropriate oversight of healthcare.
document for DD Ombuds

letter to Mr. Hakim regarding systemic issues of healthcare neglect at Fircrest

Letter to Senator Keiser regarding issues at Fircrest and DD Ombudsman 2017

Systemic Errors in Medication Administration at Fircrest



DD Stakeholder Survey for DD Ombudsman



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.






Thank you for your very real description of what our life is like. My first thought before making any other plan is “who is going to be there for my son” – even as I was being wheeled out of my home with a pulmonary embolism by medics, my thoughts were on who was going to be there when my son woke up in the morning.

Regie's Blog

There was no clear way to diagnose it and we had no idea it was even a consideration. But, as is often the case, it was discovered through a routine process of elimination and had nothing to do with the original symptoms.

See, it was the third ear infection in a row for my daughter. And even as I’m typing this, I’m exhausted by thinking about simply recounting the whole, three-month process that led to her diagnosis of Strep. The trips to the doctor; the first medication that didn’t work and having to go back to the doctor to get a different one; the one medication that required her not eating dairy (when putting medication in her cheese is one of the main ways we get it down her – yeah …that was interesting) …all of it …is just stuff we don’t talk about most of the time.

The truth…

View original post 2,300 more words

Falling off the cliff – LOMAH

If you are involved with a person with intellectual/developmental disabilities who is transitioning from high school to adult services, you have most likely become famliar with the term “falling off the cliff.”  From what I have heard, read and seen others experience, it is a terrifying event when services that were supportive and promoted community involvement are suddenly withdrawn and there were no alternatives available.   This experience has forced families into crisis when there are suddenly no supports available.


LOMAH Podcast has a weatlh of information on a variety of issues for families.  The information is helpful no matter if you are in the early planning stages, in the midst of or past the transition from children’s services to adult services.  Given that each of our situations seem to constantly change over time, as people age and develop more skills or caregivers become older or unable to provide the care any longer, we seem to always be in a period of transition.

The fact that so much of the funding for services is dictated by legislation which also varies from state to state, I know that I never feel secure due to the politics involved.

I greatly appreaciated the honesty and humbleness of the host of the LOMAH PodcastKim Albrecht, and her curiosity and research which she is sharing with others.  I have found these episodes not only very informative but also inspiring.

There are a variety of topics that are addressed, interviews with people who have been successful in their creative endevors to develop and sustain supports, and honest discussions about various roadblocks one could run into.

Please subscribe to LOMAH Podcast and be inspired!