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

 

Addendum:

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

ODDO-Advisory-Committee-Meeting-Minutes-9.16.17

DD-Ombuds-Annual-Report-2017-Final

DD Stakeholder Survey for DD Ombudsman

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.

 

 

 

 

WHY I CAN’T TAKE YOUR CALL …

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

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!

Abilify MyCite – NOS Magazine

When I have been blocked or censored from internet sites or Facebook pages for voicing an opinion that may not agree with the particular agency, I realize that I must have hit on something that is real and true that those groups or people do not want others to know about.

This censorship is destructive and prohibits progess, learning and collaboration and understanding.  This is very disturbing to me especially when this censorship is practiced by those who claim to be neurodivergent and advocate for self expression.

The most recent issue is in regards to an opinion essay written in NOS Magazine  which claimed coercion and forced ingestion of a new type of medication and how this will be used to put people in institutions.  The author claims that these psychiatric meds will be used with no consent and the side effects will be ignored while the client will be forced to be tracked with the medication.

Abilify MyCite

 

The scenario that the author describes is far from reality and it is clear the author does not understand how the medication sensor works or how it could be a benefit for those who may choose this type of medication.  The author writes from a perspective of paranoia and persecution.

I did reply to NOS Magaine on their Facebook page regarding the essay  “Human Rights Lawyer Shain M. Neumeier explains the terrifying implications of Abilify MyCite, a new drug that tracks compliance” and my comment was visible for one day.  The magazine editor even replied and stated that they publish point/counter point opinions and gave me information on submitting my counter point.  Both of those comments are now removed from the Facebook page and I have been blocked from interacting with that page.  My comment that I posted to the NOS Blog post was not approved by the moderator.

If the magazine publishes point/counter point opinions then why do they censor comments that may have a question or concern with what they wrote – particularly when it applies to the neurodivergent population?

My comment on Facebook was clarifying facts about the medication and that monitoring needs to be done for medications, side effects, bodily systems for ANYONE taking these medications – not just for the neurodiverse population.  A very different picture than waht Shain M. Neumeier painted.

I am awaiting a response from the editor explaining to me what was offensive and violated thier publishing rules.  My expectation is that I will not get a response.

Below is my opinion about this medication and a link to the New York Times article that Shain M. Neumeier referenced also in the NOS Magazine opinion essay.

This is certainly an interesting viewpoint on medication. The presumed restrictions and violations that this author writes regarding issues of “tracking medications” especially for neurodivergent people, seems absurd to me.

This is not about “forcing” people to take medications against their consent, or to cause people to experience undue side-effects. When taking these medications, people need to be monitored – no matter what “type” of person you are. This is one such tool that can be used – by choice – for those who desire it.

Many medications are monitored with blood levels to ensure that the person has at least a therapeutic range and certainly that they do not have toxic blood levels of a certain medications- not just medications that are prescribed for mental health issues. Other illnesses may be monitored by a variety of blood tests – glucose, red blood cells, platelets, ammonia, potassium, magnesium – just to name a few bodily functions that are monitored when taking medications. Again, this has NOTHING to do with being neurotypical or not – it has to do with being a human being and taking medications responsibily and appropriately to receive the best benefit.

In fact, many people may not even be aware that they have toxic levels of medications in their system and these monitoring tests are used to assess a person’s health and well being.

Also this author is assuming that this monitoring is “involuntary” – that is not necessarily the case. In fact, I had a patient once who requested to have surveillance of his medication administration to ensure that he was taking it correctly because he had stopped his medication and experienced psychotic episodes. He didn’t want that to happen again and wanted to stay out of the hospital. This was a method that worked for him. Again, it was his choice to have this electronic monitoring done of his medications.

Read the article regarding Abilify MyCite as referenced in the NOS article. Below are a couple of quotes –

“Patients who agree to take the digital medication, a version of the antipsychotic Abilify, can sign consent forms allowing their doctors and up to four other people, including family members, to receive electronic data showing the date and time pills are ingested.

A smartphone app will let them block recipients anytime they change their mind. Although voluntary, the technology is still likely to prompt questions about privacy and whether patients might feel pressure to take medication in a form their doctors can monitor.”

It is odd that a medication that is used primarily for schizophrenia has this digital technology and it may not be the optimal population for this. The article also addresses this issue.

“Asked whether it might be used in circumstances like probation or involuntary hospitalization, Otsuka officials said that was not their intention or expectation, partly because Abilify MyCite only works if patients want to use the patch and app”.

Some people will welcome this additional tool to help them remember to take their medication – others don’t need that reminder or would not want to use it. That is their choice.

This could also be a useful tool to ensure that the caregivers are providing the medication as prescribed. I know that my son lived in a facility in which the nurses signed off on medications they say they administered. I questioned them many times since my son was not recieving the expected and intended benefit of the medications which then led to more complications, stronger and more medications being prescribed. Finally, after he moved out and some of his conditions improved dramatically (the new caregivers were administering the medications appropriately) I requested the dispensed records from pharmacy, I realized that I was correct in my concern.

Such a system as with the Abilify MyCite would have picked up the extreme medication errors that my son experienced.

Abilify MyCite – First Digital Pill