“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
care.

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. 

 To KUOW:
 

“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.

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.