“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of their research other than  opinion pieces, articles that actually oppose rapid elimination of the certificates or outdated research.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.

 

 

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 vie 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.

 

Save Fircrest – Essential Supports

A bill has been passed to the Senate Floor to vote on closure of Fircrest School – one of our states Residential Habilitation Centers (RHCs).  The RHC houses two critical communities of care – a Skilled Nursing Facility (SNF) and an Intermediate Care Facility (ICF).

It is a fact that there does need to be some capital improvement to the facilities to provide a safe environment for the residents and this is why we support the Fircrest Master Plan Fircrest Master Plan A-2

The campus has been neglected in the capital budgets for years and this is one reason why there is a large dollar sign to this project.  When buildings are neglected, they deteriorate and become unsafe for residents.  This is the situation we face now.

This does not mean that the land should be sold and the residents forced from their homes and community.  It does provide opportunity to change and to make needed improvements and to re-access the needs.

These are the opportunities that we support:

Fircrest Master Plan Alternative A-2

Federally Qualified Healthcare Center with oversight provided by the Department of Health for Fircrest residents and adult residents in the state who live with intellectual and developmental disabilities.

Collaboration with the University of Washington, Center on Human Development and Disabilities to provide specialized and comprehensive healthcare to community members.  This collaboration would also provide training for students in the healthcare professions.

Opportunities for improvement are not an option if 2SSB 5594 passes.  This bill seeks to close Fircrest and deny current and future residents access to the necessary supports.

We need to defeat 2SSB 5594 to protect out most vulnerable citizens.  Tell your Senator to Vote NO on 2SSB 5594.

 

Senate Health Committee Hears Bill which looks to close ICF/IDD

Today SB 5594 was had public comments in the Senate Health Committee (Washington State)

There are actually some wonderful new ideas expressed in this bill (Federally Qualified Comprehensive Community Healthcare Clinic!!) but plans  to consolidate  from a combined campus of a skilled nursing facility and an intermediate care facility to just a skilled nursing facility is troubling.  This is  not explicitly written in the language but it is clear this is the goal.

The bill states a building at Fircrest must be remodeled and updated to serve as a skilled nursing facility.  Other steps must be taken to consolidate other buildings and ensure residents are provided the opportunity to stay at Fircrest or move into the community.

Given that Fircrest will only have a skilled nursing facility, what will happen to the residents who are not eligible for those services but choose to stay at Fircrest in an ICF/ID?  The bill does not address this population that currently resides at Fircrest.

“Former Fircrest School residents who fail to succeed in the community may, after repeated failures, remain in the community or may choose to move to another residential habilitation center; however, former Fircrest School residents may not return to Fircrest School.”

The other HUGE issue is that the community is far from ready to be able to accommodate the needs of the number of residents who may choose to live off campus.  Already there is a long waiting list for housing, staff and other services.

The critical issue that needs to be addressed before any changes can be made is that of supported living wages and supports.  These wages and supports need to be appropriately funded to provide the services.  This is the system that will provide stability, success and sustainability to community residential settings and is the issue that needs to be addressed as a first step to any issues of consolidation of the intermediate care facility.

Thank you, Alpha Supported Living

This past year has seen great changes for my son and this past Thanksgiving, I realized how much growth my son has made since last Thanksgiving.

Last year, our son, age 21, had lived at the Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID) for 5 years.  The ICF/ID was only 10 minutes from our family home and part of the community in which our son was born and raised.  We had frequent contact, outings and visits both at our home and his.  Unfortunately the team at the ICF/ID was unable to manage my son’s healthcare and daily support needs but we didn’t think we had another option.

I remember not only the great sense of relief I had when I took him back home after our Thanksgiving Dinner last year but also grief and sadness about his increased agitation and manic behavior which was so disruptive.  I questioned if we would be able to have him visit for future family holiday celebrations. He had been experiencing increasing mania and the physicians at the ICF/ID refused to follow the recommendations of our son’s psychiatrist regarding medications to control his mania.  I remember expressing my great concern regarding his increasing mania  to the psychiatrist during our meeting last December and feeling powerless in getting the needed medications prescribed and administered.

This Thanksgiving, our son was a totally different person.  He was at our family home for at least 4 hours and stayed focused and helpful.  His participation in meal prep and tasks was amazing.  He even sat at the table and ate a nice sized meal.  When it was time for me to take him back to his house, I realized that he had set a record for length of time at our house and that I was not totally exhausted and spent from trying to manage his mania, other disruptive behaviors and physical care.

I attribute these great changes to the move he made last spring from the ICF/ID to a supported living arrangement in a home with 2 housemates.  This was made possible by the Roads to Community Living Grant and Alpha Supported Living Agency in being able to provide these great services.  My son has greatly benefited in so many ways and in such a short time.

Within two months of moving and having his care provided by Alpha Supported Living, our son’s health issues were treated appropriately, medications and treatments administered as prescribed and other long standing health issues were addressed and managed.  It was great to see these changes and work with this team to create solutions that worked.   But the improvement and stabilization of my son’s health issues are just the beginning of the changes we have noticed.

Our son is learning new skills and is supported to increase his ability to make choices and take responsibility for various aspects of his daily life tasks.  He is now able to wash his hands, sit at the table and eat a whole meal, clean up his dishes, go grocery shopping for his own groceries, and is very compliant with taking his medications and other responsibilities such as ensuring his iPad is plugged in at night and putting his glasses on his dresser before going to bed. He is able to follow verbal prompts better and stay on task a few seconds longer.  He is becoming more self-directed in being able to communicate his needs and desires.

We are beyond proud of the accomplishments he has made this past year with the support from Alpha Supported Living.  Seeing first hand what a difference this care makes it is imperative for our states to support the wages of the caregivers.  We need continuity of care – both as the recipient of the care and as the caregiver – to continue to provide this care.

Some supported care agencies are experiencing staff turnover rates of 50-70%.  This is not only very disruptive to the clients but increases the overall cost of care when one looks at the cost of recruiting and training a revolving door of caregivers.  Once trained and placed in a job many direct care staff leave due to the intensity of the job and low pay. The state sets the pay rates and it is just not enough to cover costs of the direct care staff.

Supported living is in crisis.  Funding for direct care staff has been ignored for years while costs have continued to increase.  The level of intensity of staff support is increasing and we need to provide the appropriate staff.  This level of care is critical to many in our community to enable them to have a meaningful life experience.

A meaningful life is more than just having support staff in your home though.  It is being able to go out and be in the community.  Many agencies do not have funds to provide transportation or staff for outings, activities and medical appointments.  Many agencies are not able to hire a Registered Nurse to oversee healthcare or have a dedicated Healthcare Coordinator to manage the variety of healthcare needs. Again, the intensity of these needs are increasing.  We need to have providers trained in the particular needs of the population with intellectual and developmental disabilities. These aspects of care should not be “extras” but should be part of the service. But,  unless an agency is able to fund raise for these critical necessities  to a meaningful life, the clients will go without.

In my son’s situation, the transportation and healthcare are paramount to the success he is experiencing. .  My son has a job at Lowe’s working 2 hours each weekday morning  (supported employment provided by PROVAIL). and needs transportation to and from work .  He also has medical treatments at least 3 times a week for which he needs transportation and support at the treatment in addition to other medical appointments about once a week.  Without a dedicated vehicle for each home supported by Alpha Supported Living these necessary trips would be impossible.

It is only through fund raising that Alpha Supported Living is able to provide these life necessities to ensure not only the basics are provided but other opportunities to have a meaningful life – art classes, walking clubs, cooking groups, community outings are just a sampling of the other “extras” that help to provide quality experiences to one’s life.

Living in a home with supported living as opposed to in a state operated ICF/ID, is a collaborative effort.  We, as parents, guardians, residents, community members and staff, can make a real difference.  We can adapt to changes better and address issues directly when they arise.  There is more control over one’s life.  We can actually DO something to help make one’s live more meaningful – something that we generally cannot do for those who live in a state operated ICF/ID.

Below are some suggestions for what you can DO to help make someone’s life better:

  1.  Communicate this great need to our legislators – we need to meet minimum wage requirements and keep pace with the cost of living increases that we all experience.

2. Make a donation to a supported living agency to help provide for supports other than direct care staff wages.

Below is an example of how your donation helps to improve the quality of life of clients supported by Alpha Supported Living Services:

alpha-support-is-critical

(for clarification on the RN – this amount  has to do with the amount needed to bridge the gap between what Alpha is funded and what they provide. The professional services rates they receive from DDA provide for a part-time RN. The amount listed gets them to a full-time RN for 6 months)

If you would like to donate to Alpha Supported Living Services you can reach them at

Alpha Supported Living Services

MAIN OFFICE
16030 Juanita-Woodinville Way NE
Bothell, WA 98011

t 206 284 9130 | f 425 420 1133

 

Please join me in making a monthly donation to Alpha Supported Living Services – it WILL make a difference in someone’s life!

 

 

 

 

 

 

 

DD Ombudsman

Hopefully soon, Washington State will have a Developmental Disabilities Ombudsman.

This past year legislation was passed (thank you  Senator O’Ban,  the legislative champion for SB 6564, providing protections for the most vulnerable people from abuse and neglect) which will provide funds to develop The Office of Developmental Disabilities Ombudsman.

dd-ombudsman

There has been a great need for this type of oversight for all people with developmental disabilities but especially for those who live in an intermediate care facility (ICF).  While the Long-Term Care Ombudsman can help in situations for those who live in a skilled nursing facility, group home, assisted living or other long-term care facility, the Long-Term Care Ombudsman is not available to assist the residents in the ICF.

These residents have been without an adjudicator if concerns regarding their care  or other issue are not addressed appropriately.  This is especially true for those residents in a state operated ICF.  Without an independent authority to help mediate differences between the person and the state, these residents may not have had an objective investigation of their concerns.

Allegations of neglect and harm have been ignored or swept under the carpet by the state agency when conducting investigations of state facilities.  The DD Ombudsman will help prevent some of this injustice to our most vulnerable citizens.

I contacted the Department of Commerce last week to inquire into the development of the Office of the DD Ombudsman given that the bill was passed last legislative session.

Below is the response that I received from a spokesperson for the Disability Workgroup:

“A stakeholder meeting was held September 29th and written comments were accepted through October 15th.

I am currently drafting the solicitation to be released later in November. Evaluations of the bid responses will be in January 2017 and an announcement of the winning proposal probably in February 2017.

That organization will need to create the office, hire staff, train volunteers, etc. I anticipate them starting their ombuds duties sometime in the summer of 2017.

I hope this helps. Thanks for asking.”

Thrown Off Balance

The past couple of years have seen a shift in my understanding of the quality of care that is provided for individuals with intellectual disabilities.  What I had been told and what I had believed were not the reality of the situation and it has been a soul-searching experience to confront the issues and to take action.

We started experiencing problems in the year 2011 regarding issues of medical and nursing care that was substandard and downright neglectful.  I started working my way up the “chain of command” within the intermediate care facility which was just an exercise in frustration that I would learn would only get worse as the years progressed.  I didn’t want to make trouble and I didn’t want to have a big investigation done.  I just wanted the appropriate medical/nursing care to be provided for my son and others.

After I exhausted all avenues I knew for healthcare I then approached the Human Rights Committee and outline the Resident’s rights and how they had been violated.  Again,my concerns were discarded.  I approached the advocacy group for the facility and my concerns were not a priority.  Their priority was to keep the facility open and any issues that caused concern for care were ignored for fear it would give the “opposition” more fuel for closure.

While I am very concerned about the loss of access to campus based communities and intermediate care facilities, I do not want to compromise on appropriate healthcare that at least meets the minimum standard of care.  The care my son was receiving fell far below the minimum and I’m assuming that the healthcare of others was also compromised.

Jumping forward 5 years, the problems became more profound and pervasive.  It was at this point that the facility actually “self-reported” to the State Investigative Unit since I had claimed there was neglect on the part of the healthcare team and had become so frustrating trying to work with the “team” – as guardian I was excluded from most meetings and not considered part of the team or someone who needed to be consulted or listened to.   Neglect was the key word which was taken seriously.  Unfortunately, the actions taken were again just another exercise in frustration.

It was at this point that I actually started to ask questions about what state agency actually licensees and oversees the healthcare clinic.  I learned it wasn’t actually a “clinic” but only space that each professional was allowed to use for paperwork.  There was no medical director and there was no healthcare oversight.   This revelation was a huge problem with access to appropriate healthcare for the residents.

In my audit of my son’s charts I have discovered so many medical and nursing errors in addition to errors in policies and protocols that it is shocking.  For instance in the case of 90-day medication reviews there were over 8 medications that were charted as given once or twice a day by the nurse for a period of 1-3 years. They were not given – this was false documentation.   These medications were indicated at one time but at a 90 day medication review they should have been looked at and the questions asked if they were still indicated and if not, they should have been discontinued.  Instead the nurses just kept signing off they were given  – some had never even actually been given at all.  As a nurse I find this totally unimaginable.

This is not only a problem with nursing documentation but also with pharmacy reviews and the “team” 90 day medical review.  These reviews had been signed off as being done and in some cases a medical doctor wrote “med review – no changes” when there had been significant changes in just the couple of weeks prior to the review.  If I had been notified of these reviews or a 90 day medication reconciliation form sent to me, I could have very easily have seen what problems were there.  Being left out of the team and not allowed to perform my legal duty as guardian caused many problems.

At this time, until these issues are objectively reviewed by an independent investigator and the problems actually addressed and not swept under the carpet, I cannot support these types of intermediate care facilities.  The Federal Regulations need to be followed and the appropriate care provided.  I know in the case of my son this was not happening – I hope it’s not the case for everyone.