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!

 

 

 

Artistry With A Heart

Artistry with a Heart –

 

There’s a new Art Gallery in town which supports and displays the artwork of several of our local artists.  I visited the gallery today and was extremely impressed with the art work on display.

 

I met one of the mothers who was just leaving to deliver a painting of her son’s which had just been sold.  The elation that she felt and also which she conveyed her son would experience was truly inspirational.  

 

Here is some information on the Gallery taken from their Facebook page.  I urge you to make a visit to this gallery and experience the joy expressed by these amazing artists.

 

“In July 2011, Artistry With A Heart created an Art Gallery to feature works of art by individuals on the autism spectrum. Artists of all ages and styles contribute their work, and over 40 pieces now hang in our ground floor store front that makes up the gallery. We welcome all individuals on the autism spectrum to submit their works of art to us for the possibility of being displayed at Artistry With A Heart, An inclusive Art Center. A sampling of those pieces will also be added to the Online Art Gallery. Artists who submit their work can do so by e-mail through our CONTACT US page. The art can be anything including finger paintings, abstracts, photography, sculpture, and self-portraits. Let the creative juice flow! For more information contact us through out web site.”

www.artistrywithaheart.com

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper

When I read this article and see no mention of SSB 5459 in this – I realize that the bill that was so critical in my mind was of little significance to the state as a whole.  I have a hard time coming to grips with this and then wonder, if this bill was of such little significance, why didn’t legislators listen to the sensible and responsible facts that were brought to their attention and vote NO on SSB 5459?  There must be another reason that overrode responsibility, basic human and civil rights, personal choice on residence as guaranteed under the Federal Olmstead decision and the Centers for Medicaid and Medicare Services guidelines.

If anyone could enlighten me as to what deals were made which caused this bill to pass I would love to know.  Maybe if I understood what was exchanged in order for a responsible, humane and sensible person to vote yes on this bill,  I could understand why innocent people were made scapegoats for such an “insignificant” bill.

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper.

Stop thisTrainwreck waiting to happen!

Please stop SSB 5459 – There is so much wrong with this bill that it will be hard to sum up in a concise and effective letter.  The critical issue is to stop this now and think about what the ramifications of such drastic changes will be if this bill is passed.

  1.  This bill is based on regurgitated false information from years past.  Senator Adam Kline continues to talk about “the 1970’s” with regards to our facilities today.  He is correct about the changes that needed to take place in 1970 but he’s far removed from the realities of the situation today and the recommendations from the experts of TODAY
  2. There are many in the community who are eligible and have requested admission to an RHC.  DDD has continually denied admission.  This is the only reason for a declining census in our RHCS.  There needs to be a survey sent out to all in the community who are eligible to inquire about their choice.  I believe you will find many who have chosen the RHC but their choice has been denied.  It is time that DDD actually supported and adhered to the Olmstead decision and respected people’s civil right to have a choice in where they want to live.  This is the very first thing that should be done before any or our RHCS are consolidated or closed.
  3. The reports that are generated by DDD are based on false information.  These need to be scrutinized.  I have researched the data and have found so many errors and flaws in the analysis of that data.  It is incredible that these reports are continued to be passed around as “fact” without anyone in the department questioning the concerns that I have raised.
  4. Rather than answering my letters regarding the fact that the “key points” are not supported by the data, DDD ignores the questions; Executives from The Arc accuse me of being “abusive” for questioning these reports.  As any person who has done research would know, it is expected to have people question your work.  When they question you, it is an opportunity to prove your point – not to call the questioner ABUSIVE.
  5. DDD reports that they have a Quality Assurance program which is up to date.  I will be sending  a synopsis of the issues I have had in researching the QA reports that should have been done, that DDD says they do, and the lack of knowledge about where they are, if they were even done and the multitude of players involved who do not communicate or know who has what report.  It’s a huge issue of “passing the buck” and nothing is getting done.  This NEEDS to be addressed before anything else can move on.  How can DDD say they have quality assurance when they don’t even have reports done, completed or available or even know who does them? DDD has not even complied with the requirements of The Roads to Community Living grant by completing the necessary surveys of the people who have participated.  The whole grant could be in danger without DDD following through with the requirements.
  6. People contacted regarding QA – still no data available – these people just keep sending emails around saying the next person has the data.  No one has it.  Players involved in this game:  (12 names which I won’t post here but sent to our House Ways and Means Committee members)  You would think that one of these people would be able to give a straight answer.  It’s time that DDD and the DDC are held accountable for their actions and lack thereof.
  7. DSHS is focusing their efforts on closing the RHCs.  The RHCS are about the only safe place for our citizens with DD.  The community homes which DDD so proudly talks about are a shambles – no safety or QA oversight, poorly trained staff with a high turnover, inadequate staffing levels and this is just the beginning.
  8. We hear about how wonderful the homes are in the community.  Just this past month I have been told by family members who have a grown brother and a 17 year old son in an Alpha Supported Living home and a SL Start home respectfully that they are not allowed to bring a visitor to the house.  What type of home is it in which as a sister or mother (or other family member) cannot even drop in to see their loved one or to bring a visitor to meet with them?  Why would they have these policies?  This is certainly not a home in which I would place my loved one. At the RHC, I can visit whenever I want, I don’t have to pre-arrange a visit, I can bring whoever I want to visit with my son.  There are no restrictions on my visitation with my own son.
  9. Rather than embarking on projects that are experimental and also on successful programs with people who are happy with those programs, it is time for DSHS and DDD to fix and bring up to standard the issues in the community.  This is where the energy and money needs to go.  These advocates talk about how they support those in the community yet their actions are contrary to that.  The problems with abuse, lack of oversight, lack of trained caregivers, and lack of services in the community will only be compounded by passing SSB 5459.

Please for the sake of not only our most vulnerable citizens who are safe and healthy in their current homes but also for all those in the community who will be hurt even more by the changes  that this bill support, DO NOT PASS SSB 5459.