“UNSEEN” – We are being failed

If the unethical lack of services and supports for our children in Washington State has taken a toll on you and your family, you might be interested in this powerful film about how we are being failed—and why it matters.  The film has not been released yet but 3 sneak-peek zoom-based screenings are being held in September!  Registration is now open and required as space is limited.  

Thursday         Sept 15            10am – 12

Friday              Sept 16            6pm – 8

Saturday          Sept 17            10am – 12

To register for one of the zoom-based 3 screenings (which include a moderated parent panel following the screening), please see the flier or visit:https://www.clallammosaic.org/Unseen

After registration, you will receive a link to join the screening.

The isolation, lack of vital services and supports, and uncertainty about the future means the role of caregiver overpowers nearly every other facet of life. Video diaries from diverse caregivers featured in the film illustrate this universality and the often unseen and hidden difficult realities. The film also features interviews with mental health experts and policy/legal advocates, which help provide a broader view on the societal impacts. You will hear brutally honest, unfiltered, compelling human stories. The film Unseen cultivates compassion and tangible support for the caregivers in our communities—and offers the hope that things can change if we are SEEN. This means coming out of the shadows, not being afraid to share difficult realities, joining forces to change hearts and minds, and continue with persistent and effective advocacy until the services and supports become a reality. 

People with intellectual and developmental disabilities are not the burden; it is the lack of support that is the burden.

You can also view a short preview the film here: https://www.youtube.com/watch?v=kykQIaTMnoM&t=1s

Unseen Documentary: A powerful film about how we are failing parents–and why it matters. 

Please spread the word to others you think might appreciate attending a screening of this film.

“He’s 13 years old, autistic” – Austin Jenkins

Thank you, Austin Jenkins, for writing your article “He’s 13 years old, autistic and stuck in the hospital for the holidays. He’s not the only one. (KUOW.org, December 15, 2021).

This issue has been developing for many years and it should come as no surprise to those who have been involved with Developmental Disabilities and the limited resources, tangled opinions, and even more tangled politics that are the driving forces behind decisions and reports provided to our legislators to make changes to our state’s laws.

The passage of Senate Bill 5459 in 2011 was one such bill that directly affected supports for our youth (21 and under). This bill essentially eliminated in-state options for those with very high and crisis level support needs – necessitating the need to send these children out of state – far away from the natural supports of their family and local community members.

The final bill report can be found at this link but the summary is quoted below.

Summary: Persons under the age of 16 may not be admitted to a Residential Habilitation
Center. Persons between ages 16 and 21 may be admitted for short-term crisis or respite

KUOW asks for feedback on their stories.  Today, I submitted the letter below. There is much more that I could add but I hope this prompts Austin Jenkins to ask a few more questions, speak to a few more people and reach out to individuals – not the agencies which helped to create this crisis – as to possible solutions that we believe would be beneficial, not only to our family members but for our community as a whole. 


“A move to one of the state’s four Residential Habilitation Centers for people with developmental disabilities has also been ruled out. They won’t take a 13-year-old”  Why not?  This would be a great question to ask and may be a very viable solution to start to address this growing crisis.   answer to this whole problem.

It’s more than shameful how our state is unable to live up to our constitution and provide appropriate supports for this population  Washington State passed a law in 2011 which prohibits those 21 and under from receiving these supports in our community.  This bill, highly promoted by The Arc is one of the major reasons why families are forced to “choose” supports far away, separating their child from their families and communities.

By removing the choice of utilizing the intermediate care facility option (Residential Habilitation Centers) which have physical space and are currently open in our state, this bill clearly discriminated against our youth who could have greatly benefited by the supports and services at one of these campus settings which have specially trained staff to help habilitate the person so they may return to their community and a less restrictive environment.  This legislation was highly promoted by The Arc and the Developmental Disabilities Council, agencies which are given public funds to advocate on the behalf of our community.

Robin Tatsuda, with The Arc of King County misses the point of how she and others trace the growing problem of youth stuck in the hospitals too.  Unfortunately, without addressing the history of the crisis, we will continue to make the situation worse.  This can be witnessed today as these organizations continue to vehemently advocate for closure of any type of support they define as “institutional” – regardless of the choices of those utilizing these supports and finding them beneficial.

At the time when this bill was in legislation, I was in strong opposition to it.  I addressed this very issue of age discrimination with the Secretary of DSHS at the time (Susan Dreyfus) and she looked me straight in the eye and said, “parents still have choice, they can send their child to another state if they want these services.”    I guess she really meant that because that is what has happened quietly over the past 10 years.

That cruel statement brought me to tears – and still does. While I fully understand an ICF may not be the choice a family would choose, it is a much better choice than what is currently “offered” by our state -that of being confined, restrained (physically and medically) in an isolation room in a critical-care hospital, having a food tray slide through a hole in the door 3 times a day with minimal human interaction.

As a parent of a youth needing these supports, I would be forced to choose an out-of-state option too.  But I was lucky – my son needed this level of support before the discriminatory law was passed. 

Living on a campus setting, being allowed to go outside, interact with others as one is able to, go to the local public school, have vocational training, interact with the community at large and stay connected with one’s family and have other appropriate supports at an ICF can be beneficial to the person and their family.  It can provide time for healing, supports for building new skills and supports to maintain those skills.  It can buy time in a more integrated setting than a hospital isolation room, until an even less restrictive but appropriate community home or pocket neighborhood can be developed.

I know that allowing our families to choose a local, in-state option (which does not need to be built from the ground up – it already exists) can save lives and prevent extreme trauma that these individuals and their families are now experiencing – trauma that they will need to live with the rest of their lives. 

With this crisis only getting worse and with the information now coming forth about what has happened to our youth the past 10 years, I am hopeful that our legislators will be able to see what is happening to our youth, families, and community.  “Shut Them Down” is far from the answer we need – yet this is what The Arc and Self-Advocates in Leadership, People First and the Developmental Disabilities Council will be pushing for this upcoming legislative session.

Please listen to our families – you may not see or hear them – they are too busy trying to deal with the trauma in their lives.  We do have options that can be looked at – options and choices brought up by those who need or have used these supports and have found them to be extremely beneficial.  We may have to dig deep to find them and learn because they are purposely excluded from conversations and decisions by those who claim to be advocates and speak for “our families”

With that being said – as a person with current lived experience of this problem, I support Enhanced Behavior Support Home legislation currently being developed with WAA in addition to removing the discriminatory law passed in 2011 which prohibits those 21 and under from choosing one very viable option which is available in our state.

More to come on this critical issue.

I’ve been quiet this past year due to critical health issues and was going to shut this blog down since I did not have the time, energy or ability to even think about advocacy. But the fact that several people reached out to me in the past couple of months asking me for advice, seeking help for their own advocacy, or asking me to join them in other efforts, has prompted me to keep the blog up for historical references and information that may be difficult to find elsewhere. My hope is to continue to participate and we’ll see how it all transpires as time moves along.

Senator Randall’s bill cuts Safety Net

SSB 5284 passed out of the Senate on February 18, 2021. There has been much concern expressed by community members and legislators regarding harm that may be caused by this bill. It’s troubling that even when acknowledging harm, legislators still pass a bill without evaluation of the harm already caused the past several years. The specific harm in this situation is the termination of community jobs for people with significant disabilities who may not be able to secure a supported employment position in a competitive market.

As Bill Sponsor Senator Randall pointed out in her testimony on the Senate Floor – “we are not doing enough to support individuals with IDD in Washington State.  We are towards the bottom of the barrel in State rankings regarding investments in our disability community.”  Senator Randall recognizes that we need to offer more support – especially when we make changes to our safety net that is ALREADY FRAGILE. 

These certificates are part of the fragile safety net and are a critical alternative for those with significant support needs who will have employment opportunities terminated  due to his bill.  There is no offer of more support in this bill and quite frankly this bill is more than a slap in the face to some of our community members with the most significant support needs. 

We are not treating our neighbors as “less than” by acknowledging the support needs but we are treating them as “less than” when we pull their supports and safety net without additional resources. There are safeguards in place already within the current RCW and WAC which honor choice and alternative. 

While Senator Fortunato’s amendment passed and will track reduction in waiver service hours for those leaving sub-minimum wage jobs, there is no remedy for the termination of jobs. We ALREADY know jobs, supports and engagement have been terminated over the past several years due to the elimination of certificates.

The harm done by passing the “small first step 2 years ago which eliminated the certificates amongst state agencies” is evident. There were 193 employees utilizing these certificates for their employment in 2019.  These 193 people had their jobs eliminated by that “small first step.”  Has there been any evaluation of how those people are adjusting to the loss of their safety net?  Were they harmed by the termination of their employment?

In addition to the jobs terminated within state agencies, reports from those involved in Seattle and the information from King County Department of Community and Human Services are clear that jobs and community engagement were terminated.

  • Seattle – 8 people were working with a certificate making $10.-$11.50 an hour.  When the law changed, all but 1 person had their hours cut by up to 60% due to the wage increase.  The only person who did not have her hours cut only worked 6 hours a week.
  • King County – there were 143 people involved in the pre-vocational services which were eliminated in 2015 (over a transition period).  As of Sept 2019, only 24 of those were employed but with fewer hours per week.  Their average work week went from 15 hours to 7.25 hours per week.  What are the other 119 who lost their job and wages doing now? King County is in the process of updating their information on these people and is not ready to view yet.  

We need to honor each and every person and allow choices and alternatives for those who may need a different route. These certificates are NOT for any person with a disability but specifically to prevent curtailment of opportunities for employment for those whose earning capacity is impaired by age, physical or mental deficiency or injury – This is an agreement entered into by choice on the part of the all involved and specific to employee, employer, job, wage, and is time limited.

Eliminating certificates and paying minimum wage or better does not erase the fact that people have disabilities which require supports in order to find and keep a job. Elimination of certificates does not magically mean that the person does not have a disability and no longer needs supports. The majority of the the employees who choose to utilize the certificates work 20 hours or less a week and if they transition into individual supported employment their work hours will generally be between 0 and 8 hours a week. The termination of certificates will not provide any economic gain for these employees, nor will it make them more independent.

Below is a list of assessments that need to be considered for person-centered planning and budgeting for employment supports.  Without these supports, employment will be essentially impossible and how are these supports addressed in SSB 5284? How are these supports addressed in the fiscal note?   People with higher support needs may need personal care support while on the job.  Job coaches are not allowed to assist with any personal care, transportation or other supports – this means that work hours need to be limited to accommodate personal care assistance or other limitations caused by fragmented support for the person.

·         How does DDD determine your employment acuity score?

·         DDD determines your employment acuity support score by combining your employment support scores for:

·         (1) Activities of daily living (see WAC 388-828-9215);

·         (2) Behavioral support (see WAC 388-828-9220);

·         (3) Interpersonal support (see WAC 388-828-9225);

·         (4) Environmental support (see WAC 388-828-9230);

·         (5) Level of monitoring (see WAC 388-828-9240);

·         (6) Employment support (see WAC 388-828-9245);

·         (7) Completing tasks with acceptable speed (see WAC 388-828-9255);

·         (8) Completing tasks with acceptable quality (see WAC 388-828-9260);

·         (9) Medical support (see WAC 388-828-9265); and

·         (10) Seizure support (see WAC 388-828-9270).

We also acknowledge the issue of possible ADA Violations that the State could face if this bill is passed.

ADA violations – discrimination by curtailing opportunities for employment solely due to the person having a disability

  1. Eliminating the choice for specific individuals with disabilities the alternative to work in a specific job for a specific wage is discrimination.  These alternatives are set up to prevent ”curtailment of opportunities for employment” (RCW 49.46.060) There are safeguards already in place to prevent exploitation and this option is a desired option by many who could benefit using this alternative to individualized competitive employment.   We need to honor choice and Person-Centered Planning.
  2. By nature of having certain intellectual/developmental disabilities (as assessed in the Developmental Disabilities Assessment) people with significant support needs may need extra time and support to learn and maintain skills to complete a job.  By eliminating the choice to work under a certificate as an “on-the-job learner, student worker, apprentice or messenger” only due to the fact that the person has a disability may be a violation of the ADA act. 

We are asking that you please take a pause on this bill and evaluate what has transpired due to the termination of employment for those who had previously worked under a certificate.  We need to ensure that no harm was done before we can move forward.  We need to honor and respect every person in our community and providing the choice of certificates for those who need them for their employment and community engagement is one way that we can make a huge difference in a person’s quality of life.

Rather than cut our safety net and curtail choices and alternatives, we need a full array of supports to address the needs of our community members.

Just Stop It

This “self-advocacy Coalition” which penned a letter to Governor Inslee and the Ruckelshaus Legislative Taskforce needs to realize that we are all in this together. It’s not either/or and to continue with that attitude is inhumane by refusing to acknowledge the fact that people need a full continuum of supports at various stages and times of their lives. The continued denial of one type of support because it may not be what you would choose, does not mean that it’s not the appropriate support for someone else.

From the William D. Ruckelshaus Center

The legislature, DSHS, unions, providers, advocates and families have debated for decades the merits and challenges of quality of care, access to services and costs of delivery between models.

In 2018, DSHS and the legislature  asked the Ruckelshaus Center to provide process design and neutral facilitation to help parties reach consensus-based solutions around the mix of service venues and other potential uses of facilities. The “Ruckelshaus Workgroup’s” 2018 recommendations led to legislative appropriations of over $172 million in early 2019 – and in the fall of 2019, the workgroup reached consensus around a long-term vision and legislative recommendations to re-design the way that I/DD supports and services are delivered in the State of Washington.

The “self-advocacy Coalition” may not like everything that was recommended by the Ruckelshaus Taskforce and I would gather that many others do not like everything about it either. The Taskforce was challenged by not only a crisis situation which has been getting worse each year but also with trying to reach a compromise.

By definition, a compromise means to come to an agreement by mutual concession – basically that no one gets everything they want. A compromise enables projects to move forward and then actually providing some of the needed supports that we all know need to improve and increase. Without a compromise nothing will happen because groups will continue to battle each other rather than work for the good of the whole.

So, Stop it, accept the recommendations and move forward. No one is forcing anyone to use the supports but there are many who need and choose these supports and it is our duty as a State to provide.

Members of the “self-advocacy Coalition”

Allies in Advocacy
Arc of Washington
Disability Rights Washington
People First of Washington
Self-Advocates in Leadership (SAIL)
Washington State Developmental Disability Council
Washington State Developmental Disability Ombuds

Essential Care Needs

Essential Care Needs Nonprofit – a new concept that can help address the growing crisis that will only get more acute over time.

The crisis is only getting worse and rather than trying to work within a system that was developed almost 40 years ago, we must look at our population and circumstances now and in the future with new alternatives to meet the needs of our community members.

It has become even more clear in times of COVID there are Essential Care Needs that need to be addressed and funded – for the benefit of our whole community.

Supported Living Agencies, many that are already non-profits, and other advocacy groups should address the issues of development of the Essential Care Needs Nonprofit.

Now is the time!

Start video at 12:00 for information regarding Essential Care Nonprofits
ECNs would be a new form of nonprofit entity serving the essential care needs of the rapidly growing population of indigent adults unable to care for themselves.
ECNs would be a new form of nonprofit entity serving the essential care needs of the rapidly growing population of indigent adults unable to care for themselves.

Apart from the genetic toxicology of autism, my other passion is finding ways to reform federal policy to unleash capacity in supports, services and housing for the burgeoning population of adults disabled by autism.

One idea is creation of a new form of federal nonprofit entity, the “Essential Care Nonprofit” or ECN.

ECNs would be a new form of nonprofit entity carved out for special federal tax (and other) treatment because they provide basic daily-care needs to the most severely disabled. The lack of these agencies and programs across our country is appalling and inexcusable. The need is growing rapidly, especially in the realm of adult autism, where the population is expected to grow 5-fold (at least) over the next 20 years.

Two links sharing the basic concept of the ECN:

From: https://www.jillescher.com/

For more information visit:

National Council on Severe Autism – https://www.ncsautism.org

Together for Choice – https://www.togetherforchoice.org/

Caseload Forecasting for Disabilities

Silhouette of people with sunset.

Senator Emily Randall (D- 26th Leg. District, WA) has introduced SB 6056 – Concerning the budgeting process for services for individuals with developmental disabilities

This is a hopeful beginning to the generation of appropriate funding for the needed supports to allow the people in this vulnerable population to be included in their communities as they would desire, improve their quality of life and help provide a more meaningful life as they would choose.

In our opinion, this means more choices and less restrictions, appropriate assessments of needs and supports and increased stability in all areas of life – home, work and community.

This bill will help address the issue of the mysterious people who live in the world of “the  no-paid services caseload” withing DDA.  No one knows who these people are, if they are even in our state or alive or what their support needs may be.  It will at least provide case managers for this population in hopes of being able to provide supports if these people are in need.

But, caseload forecasting is not just counting heads.  We need to understand what the range of support needs is and how many people are in each acuity level in each setting to better assess appropriate funding for these supports.

The Joint Legislative Executive Committee on Planning for Aging and Disability Issues (JLEC) had a work session on January 9, 2020.  A link to the session is highlighted.


JLEC – January 9, 2020   (Olympic Neighbors presentation begins at 48.00)

Olympic Neighbors, Father’s Group of Jefferson County, Developmental Disabilities Funding Crisis Task Force (DDFTF) members provided much information to the committee.  The chart below is taken from their information.

State Funding for Supports - Jefferson County Father's Group

Regarding residential supports – in theory the SOLA and Supported Living are essentially the same supports – the difference is that the SOLA is state operated and Supported Living is typically private-non-profit/profit agencies providing the support.

There is a significant difference in the wages for the caregivers in these residential settings – that of the state employee versus agency employees – but does that alone account for the difference in cost for these residential settings?

I think there may also be differences in acuity levels of the residents in these settings.  There may be higher percentage of higher acuity residents in the SOLAS which also could be reflected in the higher cost.

This is an issue that hopefully can be addressed in Caseload Forecasting.  We cannot base our funding on the “Average” for the whole population.  We must break out acuity levels and look at the average for that level.  This method will provide a much better understanding of the necessary funds for appropriate supports.


Cognitive Bias

As the legislative session is fast approaching we need to be aware of cognitive bias – a phenomenon that we have witnessed many time over the past years.  Cognitive bias is especially prevalent with issues related to care, supports and cost of that care for people with intellectual/developmental disabilities.

Take a peek at this site to read about the following 10 Cognitive Biases that distort our thinking – remember this is only a list of 10 of these biases – there are many more that have been identified.

Confirmation Bias

Hindsight Bias

Anchoring Bias

Misinformation Effect

The Actor-Observer Bias

The False Consensus Effect

The Halo Effect

The Self-Serving Bias

The Availability Heuristic

The Optimism Bias

Let’s plan for more conversation and collaboration with regards to caseload forecasting.  Keep in mind the issue of cognitive bias and how these biases have affected discussions in the past.

Have people been heard and questions answered?

Have concerns been addressed?

Let’s listen to each other and collaborate.



Cognitive bias illustration from https://www.visualcapitalist.com/wp-content/uploads/2018/03/18-cognitive-bias-examples.html                                                               




subminimumwages@usccr.gov – We support Section 14(c) accommodations

Section 14(c) of the Fair Labor Standards Act (FLSA) is an ACCOMMODATION  – an accommodation for those with the most significant intellectual and developmental disabilities.  Section 14(c) is an accommodation that can be used by the employees choice in order to gain skills and maintain employment.

The purpose of Section 14(c) is to prevent curtailment of employment opportunities for those who may be unable to work in other settings.  Employment under Section 14(c) is not the first choice offered to people but it needs to be one of the alternative routes to training and employment for those who may need more time or hands-on support to learn a skill.

We all have a right to work  – many of us may need some sort of accommodation, if even temporary, at some time in our life, in order to maintain employment.  Why should those with significant disabilities not have that right too with Section 14(c) accommodation?

One of the major problems that has been agreed upon is that there has not been enough information for people to know what is even going on – who is working, where they are working, what they are doing or what they are earning.  Without this information, including that for those working in integrated employment settings,  how can we evaluate what has already occurred?  We need time to assess what has happened in areas that have eliminated choices and discover if those affected are satisfied with the changes.

Have these people been able to have equal opportunity, full participation, independent living, and economic self-sufficiency as they may have been promised by those who took their choices away?

The Wage and Hour Division  (WHD) of the Department of Labor (DOL) has recently taken steps to modernize its oversight and enforcement of the 14(c) program.  The process is now electronic and there is great opportunity to collect, aggregate, and analyze information which was not possible when paper applications were being used. WHD has already produced improvements with recent investigations and back wages being repaid to the employees.

We say “take a step back” and take time to gather information and evaluate.   We need to allow the improved oversight with investigational teams time to weed out the abusers of a system before we eliminate another accommodation and impose more restrictions for this population.


email subminimumwages@usccr.gov, with “I Support 14c” in the subject line. The e-mail may also be copied to federal legislators at www.usa.gov/elected-officials,

United States Commission on Civil Rights

USCCR Briefing Agenda – December 15, 2019


What is all this about sub-minimum wage?

Is it a “loop hole” or an accommodation?  It depends on how you use it and who you use it for and if you are following the regulations as intended.

Don’t fall for the argument that this is a loop hole – or at least if you do, stop exploitation of those who abuse the system rather than using it to promote employment and community engagement.

White Picket Fence

Section 14 (c) of the Fair Labor Standards Act (FLSA) was not intended to be a “loop-hole” to exploit anyone.  It was also not written to apply to whole populations of people with any type of disability.  The fact that a worker may have a disability is not in and of itself sufficient to warrant the payment of a subminimum wage.

The Special Minimum Wage Provision Section 14c of the FLSA is a vital tool that allows individuals with significant disabilities to work in an environment where they are compensated commensurate with their productivity, have friendships, support and purposeful activity – this can be in any work setting that they choose.  Often, it is in community settings which also enables the employee to build natural supports.

Everyone has a right to work. Support this right for our most vulnerable citizens!

Take a look at this fence – yes, there is a problem – what is the best way to fix it?  Tear the whole fence down or fix that one board?  My vote would be to fix the board and keep the fence.  The same with Section 14 (c) – fix the problem but keep the regulation.

As with many laws and regulations set up to protect people and provide choices and alternatives, there are always those who will exploit and abuse.  This does not mean that the system was bad or caused the exploitation but that those who abuse and exploited were doing evil actions.  Those are the ones that should be held accountable for their wrong-doing – not those who are in need of choice, alternatives and protections.

We should not punish our vulnerable citizens because there are others who will exploit them.  Without certain protections in place our vulnerable citizens will be at risk of much more danger.  What we need to do is call out the evil-doers and hold them accountable for their actions.

Department of Labor fact sheet.



Person-Centered Planning – Buzz Word or Reality?

We believe in Person-Centered Planning which means looking at cultural humility and competency, taking into account the whole person, including the complexity of his or her world view.

Man walking and balancing on rope over precipice in mountains

How can this be done when advocates do not even speak to other advocates, assuming rumors they have heard about other peoples beliefs rather than talking to the people directly?  How can this be done with family, parent, and care-giving advocates are blocked from Parent to Parent groups or blocked from publicly funded advocacy agencies such as Disability Rights Washington, (Protection and Advocacy Agency for Washington Stated) or The Arc Franchises (which are non-profit but receive public funds for outreach and advocacy) – or from participating in the Developmental Disabilities Council – which is a Federal-State partnership working to plan for and with people with developmental disabilities and their families.

Connect collaborate communicate contribute

There is a huge abyss that so much hard work, passion and caring is falling into because of this lack of ability to communicate with others.

Disability advocacy should not be a tug-of-war between 2 opposing sides – but that is what has been going on for years and it seems to just be getting worse. Disability – and in particular intellectual/developmental disabilities – is a complex web of abilities, independence and inter-dependence.  Many systems, which often are in their own silos, must be pieced together to make person-centered planning work for each individual.  This is no easy task – especially when people, agencies and advocates do not communicate with each other.

In order to make things work, we need to communicate.  We may not need to agree on everything but we need to communicate so that people know and have opportunities to understand what supports and services are needed in order to function in our communities.

Without communication and listening to those who actually use the supports and services, how can we, as a community help provide appropriate resources.  Communication is critical in avoiding unintended and detrimental consequences such as the person becoming disengaged in the process.

We need to ensure that people who use the supports and services, in addition to families and caregivers, have opportunities to be involved in new program developments.  The value of their life experiences is necessary in evaluation and feedback regarding the system and advising on policy decisions.  These are the stakeholders who we need to communicate with – not just the “professionals” or service providers.

Any changes need to be transparent from planning, monitoring, implementation and evaluation of changes made, to those who will be utilizing the services.  The individual,  their families, direct support caregivers and friends are the experts that need to be heard with their collective voice of supporting the person who is the center of the plan.