Is this “Community Inclusion?”

Seven months of trauma/crisis care and the crisis continues.

Kevin on a rid

Kevin is 26 years old and autistic.  He had been living in a supported living group home for 4 years after living at Fircrest for several years.  He started to have some behaviour issues develop in August 2018.  His psychiatrist attempted to adjust his medications but there were no positive results.  It was discovered that Kevin had elevated ammonia levels due to medication and this is what instigated the behaviour changes.

These behavior changes caused Kevin to assault his caregivers and a housemate.  The police were called, Kevin was handcuffed and taken to the hospital ER several times in the first 3 months of these changes. In November 2018, Kevin was hospitalized for 5 days due to self-injurious behaviors.  He then returned to his group home.

Two month later, on January 7, 2019, Kevin became anxious, hit a caregiver and a housemate – police were called and again Kevin was handcuffed and taken to the Secure Emergency Care Unit (SECU) .  Kevin was in a room with 4 other patients in the SECU – a unit that is critically important for the healthcare of our community but not the place to hospitalize an anxious person with autism. Kevin was very, very upset, cried and wanted to go home.  The group home stated that he was not allowed to return.

Kevin’s family took him to their family home but within 2 days Kevin became more and more upset because he wanted to go to HIS HOME.  His parents were unable to calm Kevin down and they were forced to call 911 for assistance.  Kevin again went back to the SECU for a night before he was transferred to a medical unit where he stayed from January 10, 2019 through February 20, 2019 when Kevin’s family was so devastated by the trauma he was experienced by being restrained chemically and physically in the hospital they attempted to take him home.

The home visit started out well but within a couple of days, Kevin became more and more anxious, wanting to go back to HIS HOME.

“The owners of the group home came yesterday and I think he was thinking he was going to his group home yesterday or today and that took him to the breaking point. No big changes, he just doesn’t want to be here anymore. He asked for his favorite caregiver all the time.

We just don’t know what else to do. It is such a sad situation. The group home owners told us they don’t want Kevin back until he gets his medications and behaviors fixed by the Fircrest team. DDA people are telling us there are no beds. Kevin is trapped in this mess and his father and I don’t know how to help him anymore!! 😢

Kevin again was admitted to the SECU about February 27, 2019 where he remains today.

The plan that DDA has come up with now is to find a place to have a respite bed and Kevin will be able to stay there from March 11 – March 28, while DDA helps the group home look for a house.  If Kevin does not have any behavior issues during this time he will be able to go to the new house if it is ready – if not, well – let’s not go there and let’s assume DDA will be able to provide the community supports that Kevin needs.
Kevin mowing the lawn

Please put pressure on our legislators to fund community supports – years of cuts in addition to understaffing and underpaying caregivers in addition to greatly underestimating the necessary funding for services and supports has led our state (and others) on a rapid downward spiral.

It’s time to pull ourselves out of this mess, understand the choices and needs of those we support and be realistic with funds and services.

 

Kevin – 34 days trapped, restrained, drugged and traumatized in a hospital

Why is traumatizing an autistic man allowed to happen?

How is Kevin going to heal from this abuse?

drug addiction

Kevin’s 33rd day in a hospital room. (Now it’s 34 days as of Feb 13, 2019)

The last 4 days Kevin has become increasingly desperate. The nursing staff at the Medical Care Unit where he is are such a great group of professionals. They have tried to keep him occupied, even taking him on wheel chair rides around the floor, but each day that passes he grows more restless. Kevin is a 5 year old (6’2” tall) that wants to go back to his safe/familiar room, surrounded by his things. He also wants to go for hikes, to the store, the movie theater, and the library. Now he is hitting himself in the stomach and legs with such force that his legs and abdomen are completely covered with purple and black bruises. This is the only way that he can deal with this overwhelming stress. He is limping because he hurt his left leg during the self-injuring actions that now are happening continuously throughout the day. Yesterday he became increasingly anxious with each passing hour, pleading for his “Bellingham house”. He began to scream, hit his room door and window and security was called. Kevin hit his RN and one of the security guard during the incident when they attempted to keep him safe in his room. Throughout the day he was heavily medicated with no success. At night, he managed to escape from his room and run downstairs to the hospital lobby and then outside where he was wrestled by security until Bellingham police arrived.
After he was guided back to his room by the police he was finally medicated with an IM injection of B52 (Benadryl/Haldol/Lorazepam). He has been asleep since then, in a way I feel this is better for him to stop his mental anguish and physical self-inflicted pain.

This situation is a disgrace, my child deserves better from our system. He will severely injure hospital staff or will be gravely injured by medication administration and/or being restrained.

Please contact legislator:
Sharon Showmake at 360 7867854
Luann Van Werner at 360 7867980
Doug Erickson at 360 7867682

Plead for my son to be able to go to a respite bed where he can have physical activity outside of his room, He is unable to comprehend what or why this is happening to him. He needs a less restrictive environment where he can feel free and safe.
please feel free to share!

Marcia Alspaugh

The Ableds (or Allistics/Allists)

The Ableds (or Allistics/Allists) – anyone who is not autistic.  The Ableds are named as the root of most of the problems that autistic people face in society.  The Ableds are said to go out of their way to make life harder for autistic people.  The Ableds do not understand autistic people.  The Ableds are evil and are only self-serving.  The Ableds are for eugenics.  The Ableds. . . . .

Personally, I’m really tired of reading about “The Ableds” and reading about all they are doing to impinge on the lives of autistic people.

I’m not sure if autistic people have even thought about how the so-called “ableds” have actually been there providing support so that autistic people (and all the other disabled people – specifically those with intellectual and developmental disabilities) are not isolated in their homes – oops – that is an ableist statement.   How can one do anything that isn’t ableist in the eyes of these neurodiversity activists?  And though “the abled” may not be autistic, they may have other disabilities that affect their ability to engage in meaningful activities of their own.

Many of “the abled” devote their lives to supporting those with disabilities so that the disabled have opportunities they would not have without that support.

Many disabled people, if not most, live in collaboration with their “abled” caregivers and support people.  Some disabled people may be totally unaware that their support person has another life besides being there for support. because that “abled” person is devoting their life to support the disabled person.

What I find extremely discordant is that it seems that many of the people who identify as neurodiverse also identify as non-binary and prefer pronouns of they/them.   For being so unyielding about their non-binary identity they are also very dogmatic about calling anyone who is not autistic “Abled”.  There is no non-binary when it comes to Abled vs Disabled in their minds.

 

 

Fantasy of Inclusion

Take a moment to read this blog posting “Three Strikes… and He’s Out?

Wow – this is reality for many of our family and community members – this is why we become isolated.  Inclusion for us is a fantasy.

A recent comment made to me by a King County District Court Judge regarding taking my son to a self-advocacy meeting and a Seattle Commission for People with Disabilities meeting ;

“I think you took your son  there just to bother him”   (referring to the Autistic Activist who told me that guardians are all self-serving and every person is able to speak for themselves)

Thank you, Judge, for your understanding –  I do not take my son places to bother others – is that how you view INCLUSION, Judge?

Yes, I’m sure my son’s behavior does bother people and he is not able to be appropriate in many settings of inclusion.  Waiting in line, being patient, being quiet, sitting down, keeping hands to himself, are all very difficult things which take constant support to try to have a resemblance of “appropriate” behaviour.   It takes alot of energy to provide this constant support – one of the reasons that caregivers become isolated when ensuring people with disabilities are included.  We don’t want to bother others and it’s not fun for us to try to manage our son’s behaviors in places that are difficult for him – it’s always a balancing act with a needed escape route.

So, if you see us out in our community – we are not there to bother  or frighten you – we are there to try to give our son some meaningful experiences in life.

 

The last of the Institutions – Part 5

Unfortunately, once again, Susannah Frame has mislead people in this “investigation” series on King 5 in Seattle.  There is much to clarify in this recent segment which aired December 8, 2015.

Myth 1

“Only a handful of states operate more institutions for people with developmental disabilities than Washington. And in Washington, more people live in these segregated settings than most of the rest of the country”

Fact of the matter:ICF ID Table 2013

The above table is only the STATE Operated ICF/ID’s

26 states have fewer State operated ICF/ID s for a total of 25 facilities which are home to 11, 294 people (Average per facility – 451 people)

24 state have more State operated ICF/IDs  for a total of  828 facilities which are home to 42,553 people (Average per facility – 51 people) –

Hardly what I would call a handful of state (or facilities for that matter!)

 ICF ID Chart by state 2013

Myth 2

“Since the 1970s when the deinstitutionalization trend started, 16 states have closed all of their institutions that once housed the developmentally disabled, including Oregon, Alaska, and Hawaii. And 21 states, including Idaho, have fewer than 100 residents total living in these types of public facilities”

Nursing Facility and over 16 residents 2013

CMS cost reported by states 2013

The above table is taken from the CMS-64 report.  Again, Susannah Frame is incorrect with her “facts”.  There are only 8 states that have not reported funds for a STATE OPERATED ICF/ID.

It is interesting to note of those states with no costs for a state operated ICF/ID,  6 of those reports costs for private ICF/IDs.  Some of these are quite pricey to the states that have them.

Interesting that only 12 states do not have a large State operated Facility and only 7 states have less than 100 people in these state operated ICF/IDs and Nursing Facilities.

More to come about the private facilities in each state and the funding for both the ICF/IDs and the Home and Community Based Waivers (HCBS).

I believe Ms. Frame and King 5 have some additional investigative work to do.  This is a very sloppy example of research which they are promoting.

Myth 3

According to Mr. Bagenstos, supposedly a “top Department of Justice attorney in the Civil Rights Division” Washington state “remains kind of stubbornly, an outlier”

Look at the tables above and see for yourself.  By the definition that I understand, Washington is CERTAINLY NOT an “outlier.” 

That’s all for today – more myths to be examined from this episode withing the next few days.

Data Retrieved from the following resources:

Medicaid Expenditures for Long-Term. (n.d.). Retrieved from http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/downloads/ltss-expenditures-fy2013.pdf

(2013). Residential Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through Fiscal Year 2011 (2013). National Association of State Directors of Developmental Disabilities Services (NASDDDS), Human Services Research Institute (HSRI), Association of Professional Developmental Disabilities Administrators (APPDA). University of Minnesota.

United States Census Bureau – Population Estimates – National Totals 2014. (2014). Retrieved from https://www.census.gov/popest/data/national/totals/2014/index.html

Univesity of Colorado Department of Psychiatry. (2015). The State of the States in Developmental Disabilities. Retrieved from http://www.stateofthestates.org/index.php/intellectualdevelopmental-disabilities/state-profiles

 

The Olmstead Decisions is Misinterpreted

 

 

Please support respite and crisis care

Clients & Families can’t wait another year for help. Most of us have been in the position of having to wait for services….let’s try to cut the wait time for others.

Now is the time to write the members of the House Committee on Early Learning & Human Services.  They are having an executive session on Thursday March 26, 2015.

It is very important that the YVS  (E2SSB 5243)bill be sent moved on. If it does not pass out of committee (Executive Session) it is delayed another year.

This bill will help reverse some of the damage and lost respite care from 2011 when the legislature decided to close Frances Haddon Morgan Center.

Bill information:  http://app.leg.wa.gov/billinfo/summary.aspx?year=2015&bill=5243

Please send comments of support for the bill E2SSB 5243 to the following House Committee Members:

PLEASE~If you have not as yet contacted Early Learning & Human Services Committee in the House regarding E2SSB 5243, please do so now.

You can call their office, or the Legislative Hotline at 800.562.6000 or email them.

Ruth Kagi, Chair                                                          ruth.kagi@leg.wa.gov                         District 32        (360) 786-7910

Brady Walkinshaw, Vice Chair                                    brady.walkinshaw@leg.wa.gov            District 43        (360) 786-7826

Maureen Walsh, Ranking Minority Member                maureen.walsh@leg.wa.gov               District 16        (360) 786-7836

Elizabeth Scott, Asst Ranking Minority Member         elizabeth.scott@leg.wa.gov                District 39        (360) 786-7816

Tom Dent,                                                                   tom.dent@leg.wa.gov                         District 13        (360) 786-7932

Brad Hawkins,                                                             brad.hawkins@leg.wa.gov                  District 12        (360) 786-7832

Christine Kilduff,                                                          christine.kilduff@leg.wa.gov               District 28        (360) 786-7958

Bob McCaslin,                                                             bob.mccaslin@leg.wa.gov                  District 4          (360) 786-7820

Lillian Ortiz-Self,                                                          lillian.ortiz-self@leg.wa.gov                 District 21        (360) 786-7972

David Sawyer,                                                             david.sawyer@leg.wa.gov                  District 29        (360) 786-7906

Tana Senn,                                                                 tana.senn@leg.wa.gov                       District 41        (360) 786-7894

An Education for ALL

My current advocacy situation is teaching me alot – I’m sorry to say this because a family is being destroyed by the system which is supposed to help us.  But what I am learning is part of an education that we all could use so that we can be prepared for these very same things to happen to any one of us in advocating for safe and appropriate care for our children.

Mary, the mother of a 16 year old boy with autism is in crisis – all because she complained about inappropriate care which was causing health problems for her child, limiting her ability to visit with her child and her desire to have his placement changed from the group home to a residential habilitation center again.  The community experience was not working out and in addition to the above concerns there are also issues of alleged sexual abuse.

Mary, after discovering another issue of false documentation in the group home log, she had her son taken to the hospital.  She called an ambulance because she knew it was not safe for her to drive him.  She followed.  At the hospital, Mary was met by a CPS caseworker.  Mary felt relieved, thinking that they were there to look into the issues of the home.  Mary could not have been so wrong.  CPS was there because the Seattle Police had been called for an emergency dependency issue.  At this point we are unsure who made that first call but the records are being subpoenaed.

Mary’s son was taken into “protective custody” (sent back to the group home where the alleged abuse and neglect occurred) because Mary is unable to care for her son due to:

1. Lack of supervision

2.  Mother’s inability to safely care for sons’ needs (mental health and basic care)

 

Now, these issues were never in question.  This boy had been in an RHC and then was moved to a group home.  It is clear from the history that the mother cannot safely care for her son and she has not disputed that.  She is seeking safe, appropriate care.    When she took  her son to the ER, she made it clear that she wanted him safe and out of that home (she had been trying to have her son moved for about 1 year) and ALL involved knew this.  She was not running away, she was not taking her son to an undisclosed place, she was not disappearing – she was taking him to a safe place.

This boy has a history of elopement (how many of our kids with autism exhibit this behavior as part of their “normal”?)  Well, the boy ran out of the emergency room and no one could find him.  Security finally did.  The CPS caseworker wrote this up in a way to make it seem as if this boy ran away from his mom because she was not able to care for him or that she was hurting him.  The CPS caseworker either does not understand what “typical” behaviors for kids with autism are or she was writing her report to implicate the mom for something that she did not do.  Either way, this is frightening to know that our lives could be thrown into crisis by a CPS caseworker who either has an agenda or does not know what is typical for kids with certain diagnoses.

CPS has now filed an Emergency Dependency and by court order now Mary is only allowed supervised visits with her son.  CPS can only afford to pay for a supervisor for 2 hours a week so even though the court order says she can have up to 5 visits per week, she only gets 2 hours of visit time.  That is until the background checks for her other appointed supervisors come back and they are able to take the CPS class to learn what is required to be a “supervisor” of a visit.

This is tearing this family apart – as if they didn’t have enough already.

CPS is looking at this mother’s complete history to see if she is” mentally fit” to care for her son.

Now, guess what.  The mom has had a history of depression which was later changed to Post Traumatic Stress Disorder.  What mom of a child with autism does not have some sort of anxiety/depression/PTSD or some health issue related to high levels of stress?  Because the mom has a “mental health” history, she is now having to prove that she is not psychotic or mentally unstable.

The mom had a previous CPS case.  The CPS caseworker wrote in the court petition “Mom refused to pick up child from hospital when he was discharged – Case unfounded”  But, it doesn’t matter, since she has a history, this is looked at.  In fact in this case, the mom called CPS because she didn’t want to get charged with abandonment.  She had an eye injury and partially detached retina from being stabbed in the eye by her son.  That was why he was in the hospital.  She is a single mom and was still in the process of healing with that eye injury and could not safely take care of her son when he was ready to be discharged.  For being a loving and caring mom and trying to do the right thing, she is being viewed as a criminal.

This scenario is horrific.  This is going on right now.  This scenario should NEVER have happened.  But once CPS is involved in an emergency dependency, there seems to be no stopping or turning back.  So in the meantime this family is destroyed, the boy is confused about why he can not have his regular and often visits with him mom and sister, why he can’t go to church, why he can’t to play basketball with his mom, why he can’t go to their weekly dinner at Applebees’ with his mom and sister.

It’s hard enough for families to work with one system (DDD) but with CPS now in charge of this case, DDD has taken a back burner until the dependency case goes to trial which could be 2 more months.

And still, the mom is very concerned and worried about her son’s health and safety.

I hope that no one else experiences these abuses of families by the systems which are set up to protect our kids.  We are not criminals!