More subminimum wage – can we just get real

EHB 1706 sits in the Senate Rules Committee.  As long as it’s in Rules committee there is still some hope that reality will set in that this bill not only short-sighted but harmful.

I am writing with some major concerns regarding issues with EHB 1706. While this bill may have started with good-intentions, it is extremely short sighted regarding the complexity and collaboration needed in any supports addressing the needs of our disabled population affected by significant intellectual and developmental disabilities. Contrary to what has been said in hearings, it is not common practice to pay disabled people less than minimum wage. It is not common practice to use special certificates for a commensurate wage.

Special certificates for a commensurate wage are not the same thing as “warehousing people in sheltered workshops”. Special certificates do allow a choice and alternative for those who may not be able to work independently in a competitive market or for those who enjoy the camaraderie of working with peers.

We no longer have sheltered workshops in our state but these certificates are very much desired by those who chose to work in group integrated employment in community settings. Person-centered planning and adherence to the Olmstead decision regarding choice are issues that would be violated if this alternative was removed from a smorgasbord of opportunities that people with significance disabilities may choose from. Again, the issue is choice. No one is forced to use these and they are not common practice – but for those who do choose to use them, this opportunity can be life saving. Why take this away?

Other concerns regarding the issues of supported employment in our state – if the support is considered only short-term until the employee is able to be independent or the employer builds in enough “natural supports” so that the employee does not need a job coach, this will lead to even more unemployment in this population. Unfortunately, I know this too well given issues with my son who works in supported employment with a 1:1 job coach. This is not something that he will “outgrow” but a support that he will need the rest of his life. Is he going to be the victim of this policy when it is decided that job supports are no longer needed because he’s had enough time to learn the job?

It is not common practice to pay people with disabilities less than minimum wage. These special certificates are for specific employers, specific jobs, specific employees and for a specific, limited time. It is common practice to pay people with disabilities minimum wage or higher but their work hours are greatly reduced. For instance, my son works in supported employment in a competitive integrated job – he earns $16.58 an hour – a great wage for him. He only works 7.5 hours a week. This is also great for him because of his disability – working more hours a day would be disastrous for him.

While this bill seemed to have good intentions – it is extremely short sighted. There was a failure to even address the recent JLARC report which addresses how few hours disabled people work and less than 10% make a “living wage.” DDA intends that its services provide quality of life benefits for clients, such as choice, relationships, integration in the community, and competence., however there are no evaluations that are done to measure if this outcome is met.

We hear from an affiliate of the national Arc Agency that Washington ranks highest percentage of “employment and day services clients” enrolled in employment services. (87%) But – “Not all clients who receive employment services have a job” which is very clear when scouring the data reported by the county contracted providers ( https://www.statedata.info/washington-ddd/) When one of the affiliates testified that working under a certificate was something that was forced on them by “well meaning do-gooders”, it inhibits their growth as employees, chances of advancement and their ability to support themselves and live off of public assistance. This person is speaking from a totally different reality and perspective than that of the people who have chosen to work under a certificate or of a person, like my son, who while able to learn and function with appropriate supports, will never be independent, able to support himself or live off of public assistance. We need to face reality and this bill is not the way to do that.
Below are just a few bullet points from the JLARC report that need to be taken into consideration:

JLARC staff analyzed DDA data for the 6,975 clients enrolled in individual supported employment during fiscal year 2018.

• 675 clients (10%) earned more than the federal poverty level ($12,140 per year for a single person).
• Earnings vary by support needs. 2 Clients with lower support needs tend to earn more wages.
• 44% of clients with high support needs were unemployed. This is double the rate for clients with medium support needs and five times the rate for clients with low support needs.
• Clients with high support needs who were employed worked 21 hours per month on average. This is less than half the average hours for clients with medium support needs, and a quarter of the hours for the clients with low support needs.
• 99% of clients with high support needs earned less than the federal poverty level.

Addressing this issue only from the Department of Labor viewpoint totally misses the collaboration needed to provide appropriate supports for our disabled community members and I find this approach extremely harmful to those people it was supposed to help. The misinformation used and biased opinions heard regarding choices and alternatives for those with significant disabilities has been ridiculed and dismissed as “living in fear”. I and others who live this life challenge you to listen to those who are actually affected by these policies – not necessarily the people you are hearing from. We need an opportunity to be heard too but when we are censored and blocked from the affiliate agency, it appears to legislators that we do not exist.

Our hope is that this will change. We are gathering people who have first hand knowledge of the issues and how these policies are actually hurting, rather than helping those we live with, care for and love.
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A New Low for Disability Rights Washington

I have recently been informed of a situation in which a lawyer from Disability Rights Washington – Susan Kas – removed a 19 year old young woman from her family home and took her to an undisclosed ‘shelter” in another city.  Disability Rights Washington  (DRW) is the federally funded Protection and Advocacy Agency for our state.

Last month, Amber O’Neil, age 19, went missing from Seattle and was thought to be with a 52 year old man she met at Seattle Central College.  Here is a link to the news media coverage of her missing and then of her being found in Oregon.  David Posey was the man she was with and he was taken into custody in Oregon by US Marshall Service on June 20, 2018 for parole violations and remains in prison.  He had previously been charged and found guilty of grand larceny, larceny of banknotes/checks (counterfeit money) and “simple assault of family members”.  He also had counterfeit money on his person when he was taken into custody on June 30, 2018.  Amber returned home to Seattle but continued to correspond with David Posey, claiming to be in love and wanting to marry him.  Amber’s father is against this relationship and this difference of opinion has caused some turmoil in the family.

David Posey had instructed Amber to contact DRW regarding her civil rights.  Amber did as she was instructed and DRW staff lawyer, Susan Kas, has personally been involved in helping Amber with her civil rights.

Susan Kas, staff lawyer with DRW

Susan Kas personally went to Amber’s home, served some papers to Amber’s father and together with some other staff removed Amber from her home and took her to an undisclosed “shelter”.  Amber appeared in court with about 5 DRW lawyers/staff on July 9, 2018 regarding issues of guardianship.  Adult Protective Services was also involved.

Disability Rights Washington cannot provide direct assistance in the following situations:

  • Criminal law
  • Family law
  • Assistance becoming the guardian of an individual with a disability
  • Out-of-state issues
  • Workers compensation
  • General medical malpractice & personal injury
  • General consumer bankruptcy issues
  • Any issue or problem not directly related to your disability
  • Assistance finding employment, housing or financial assistance
  • Assistance filling out forms & Social Security applications
  • Anything that is not the wish of the person with the disability

From the video Disability Rights Washington – Rooted in Rights

“when we choose how we advocate, we don’t advocate for what a person may say is best for a person with a disability, we really try to focus on the expressed interest which is different than what some people might call the best interest of someone.  That’s what we think everybody, regardless if you have a disability ought to be able to make important personal decisions for themselves.” (Susan Kas, Staff Attorney, Disability Rights Washington)

Issues of Guardianship – The court needs to be involved  there are legitimate concerns in this issue regarding the relationship of a vulnerable adult with man almost 3 times her age who has a history of being convicted of grand larceny, counterfeiting and abuse.  He was on parole but is currently incarcerated after taking Amber out of state – she was missing for about 30 days – when they were located in Portland on June 30, 2018.  Common sense tells us that this relationship would be cause of concern FOR ANYONE! Having a concern about this relationship is not abuse – it is true concern for the safety, well-being and protection from exploitation of a young woman who just recently graduated from High School.

DRW sees this as a violation of Amber’s civil rights.  Are they now providing her with the counseling that her father was?  Are they providing Amber with honest choices and truth about the situation?  Or, are they using her as a PAWN to in this horrendous situation of civil rights vs. common sense and caring?  This is not a game, this is the life of a young woman who was in school and had an internship for this summer that she has now lost.  She had goals of an education and a better life.  What does she have now? What will she have in the future?

Disability Rights Washington is governed by a Board of Directors, with help from our Advisory Councils. These groups are made up of people with disabilities, family members, and others who have an interest in disability rights.

This video describes the Protection and Advocacy System

A substantial portion of the Disability Rights Washington budget is federally funded.

Where are the Parents?

Where Are the Parents?
By Sue Stuyvesant, Parent

Hey everyone. For those of you who don’t know me (I’m only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder — and CUTE! OK, now for the reason I’m posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren’t more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, “Where are the parents?” I went home that night, started thinking – and boy was I pi**ed – and banged this “little” essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around………….

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child’s medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, “Is this the time when my child doesn’t pull through?” They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won’t sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn’t cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.