It’s a Wonderful Lie

WA Action Alert

 

Once again, The ARC – Washington State has issued an Action Alert to advocates with inaccurate and unfounded information.  Is this another attempt to rile up advocates for those who have intellectual or developmental disabilities to go against one another rather than working together for the good of the whole? It is a wonderful lie, but it’s a lie.  That is not wonderful – it’s deceptive and harmful.

Please see this link for accurate information from both the Office of Financial Management and Memo from DDA Asst Secretary Perez re 2014 Proposed Supp Budget.  It is clear from both these documents that The ARC-Washington State is misleading our citizens.  I have written to both Sue Elliott, Executive Director and Diana Stadden, Policy and Advocacy Coordinator to indicate the source of their information for the extremely misleading Action Alert.  They have not been able to produce any evidence to support their claim.

 

Alert

Below is the text of The ARC – Washington State Action Alert

Arc action Alert for posting

Comparing the misleading information above which was sent out in a media blitz on December 19, 2013, the real information is below:

In light of these facts, Governor Inslee is proposing modest adjustments to the 2013 Supplemental Budget.  There is a very slight .7% overall increase in the DDA budget to meet these changes, which include:

  • An expansion of eligibility to Medicaid to individuals between the ages of 19 and 64, with income below 138% of the federal poverty level;
  • Funding for full time staff to perform preadmission screening, resident review, and specialized services (when needed) to Nursing Home clients in the Residential Habilitation Centers.
  • Reimbursement for developmental and autism screening will be added to the Medicaid plan to assure that children with developmental delays are identified as soon as possible.
  • Hiring of additional Residential and Community Services investigators of supported living providers in order to improve the timeliness of investigations, which will be funded through a certification fee.
  • The Vulnerable Adults Incident Tracking system (TIVA) which will be  funded through the Roads to Community Living grant.
  • Development of the Community First Choice option Medicaid waiver which would result in the state receiving an additional 6% federal match for services provided to individuals with developmental disabilities and the elderly.  The savings could be re-invested in additional client services.
  • Capital Budget—Funding added to the Capital budget to make infrastructure repairs at Lakeland Village and Fircrest School.

It certainly appears to me that there is support from our Governor to ALL people with intellectual and developmental disabilities – from the young children to the elderly, from those at home to those in supported communities.

Please, encourage The ARC chapters to support a continuum of care, support ALL people with ID/DD and do not pit advocates against each other by spreading false information.  In order to improve the situation, we need to work TOGETHER!

Please do write, call, email, fax Governor Inslee to indicate your support for working together for the benefit of ALL

Call the Governor’s office at (360) 902-4111

Send an email to the Governor at https://fortress.wa.gov/es/governor/

Post a response on Governor Inslee’s Facebook page at https://www.facebook.com/WaStateGov

(You must have a Facebook account. Be sure to tag your legislators.)

Send a tweet (text message of 140 characters or less) to Governor Inslee’s Twitter at https://twitter.com/govinslee

Arc alert

Today, the Arc of Washington issued an action alert.  There is inaccurate and misleading information in their alert.  I have written to Sue Elliott,  Executive Director and Diana Staddon, Policy Director with my concerns about using false information which doesn’t even relate to the bill (SB 5371).  When, and if, I hear back from them, I will post their answer.  I do hope they correct their errors.

I understand The Arc opposes this bill but I do need the organization to explain why and the reasons.  They claim SB 5371 is bad policy.  I claim their false information and unrelated information are bad policy.

The is funded with thousand of public dollars and I do not appreciate my dollars being spent in “false advertising”  and especially when those dollars are to be used to advocate for improvements to the care of our citizens with developmental disabilities but are used against them.  I believe we can do better if our public was allowed to be better informed.  I do not want to post their alert since it provides information which is wrong.  You can contact The Arc  – Washington State for information.

I need to post this on my own blog because I am blocked from posting on The Arc websites.  I cannot give the link since I am unable  to access their website. They consider my questions an attack against their organization.  All I would like are answers.

If you are interested I have attached my letters to our Senate Health Committee here.  I have commented on both SB 5370 and SB 5371

Senate Health Committee SB 5370

Senate Health Committee SB 5371

AFH citations for repeated violations

WA State Licensed Adult Homes for People with DD Citations 2011 and  2012 Samples

Alarming? Really?

 

 

Prevent abuse of people with developmental disabilities was the Op-Ed piece in The Seattle Times yesterday written by Sue Elliott, executive director of The Arc of Washington State and Ed Holen, executive director of Washington State Developmental Disabilities Council.  The issues brought forth are not new and I’m wondering why these agencies have not been continually advocating for safe and appropriate care, oversight and investigations all along?  It was clearly evident from the Op-Ed piece Supporting our most vulnerable citizens published in 1999 by these same two authors that these issues were of great concern.  What happened in the past 13 years between these two essays to improve the situation?  Apparently nothing – so what are these agencies advocating for and what is their purpose?

My belief is that these agencies have been led down a misguided path – rather than looking at the person who they are supposedly advocating for they have been advocating for those who gain financially from social experimentations of rapid deinstitutionalization without evidence based studies that this is the best option for some of our most vulnerable citizens.  There seems to be a rule that the data which DSHS and DDD share with these agencies is golden even though it may not make sense.  But because the data supports the agenda of these agencies which are backed by their supporters who will gain financially from this misguided advocacy,   it is used as fact and this is what our policy makers are given to use for legislative purposes.

In my attempts to ask these advocates and other decision makers in our state about the questionable conclusions I have been told may several of the executive directors of Arc chapters in our state that they do not question the information which DDD gives them, they do not ask questions about the sources, they assume the data is correct.

Recently, when I asked to meet with the statewide coordinator of the parent coalitions run by The Arc of King County,  he wrote he had seen my questions and data but did not want to address them.

All I can think is that these people just put their head in the sand and do not want to face reality.  They need to look at the questions asked and answer them, look at the glaring discrepancies and address them – they need to be accountable for their actions and inaction in their advocacy and not blame the legislature.  They are the ones giving the legislature the information and if they give the legislature garbage they will get garbage.

My concern is that many vulnerable people are being hurt by these who claim they care.

 

 

Seattle Times “Opinion”

I want to be hopeful but am afraid that nothing will change.  Even though The Seattle Times published an article by Maureen O’Hagan entitled ” State ignoring abuse at group homes “ and The Seattle Times published the editorial “DSHS must investigate alleged abuse at group homes for the disabled” my hopes of reform fade.  We hear that The Arc – Washington State will be advocating with legislators on this.  The Arc-Washington writes “The basis of the problem lies with DSHS. It takes weeks or months for them to respond to reports of abuse and often nothing happens. The Governor proposes to add funding for more investigators.”

This is just “talk” and will amount to “no action” from The Arc, Disability Rights Washington, Washington State Developmental Disabilities Council and other agencies which receive public funds to advocate for this population.  The history is that they use these funds to discriminate our most vulnerable.   In the name of deinstitutionalization these groups have advocated for community inclusion.  What these groups do not understand is that many of these same people already lived in a community – it may have been a different type of community than what the people who run these organizations may choose to live in,  but it is a community for the people who find it supportive, safe and stable.

The mis-placed and misguided advocacy of these groups is also the basis of this problem.  I know that I am not the only one who has attempted to educate these advocacy groups on the issues of unsafe conditions in these group homes or issues of safety and stability.  These groups have not wanted to hear or acknowledge that there were problems.  They wanted to see that moving people from stable and safe supportive communities to individual homes scattered far from their friends and families to be “included” in community was an experiment that was succeeding. They wanted to see “inclusion” and “integration” work.  I do too – the difference is that I see inclusion as being part of the community – community meaning participating, contributing and belonging.  I believe each person can define what that community is to them and they can make a choice.  The misguided advocates do not allow people to make this choice and have defined “community” to mean something else.  Many times the “community” these misguided advocates force upon people does not lead to “inclusion” but to  ISOLATION and IMPRISONMENT.

This experiment failed – many have been harmed or killed.  It’s time to stop this experiment on unsuspecting people. How many of these people provided “informed consent” to this social experiment?

Where is the advocacy for improved oversight, better staffing levels, better pay for caregivers?  These are critical to improving care, safety and stability for all.  Yes, we need investigations but investigations without action will do nothing except waste more money and cause more harm.

 

 

“Throwaway People”

What happened to The Arc?

Sue Elliott, executive director of The Arc of Washington State and Ed Holen, executive director of Washington State Developmental Disabilities Council (DDC) wrote about the issues very well in the years 1999, 2002 and 2005.  Please read about the advocacy for our “most vulnerable and politically powerless” and voiceless members of our communities. (Ed Holen and Sue Elliott Articles to Seattle Times)  The “Special to The Times” of 1999 highlights issues that have not changed in the 13 years since it was written.

The Arc used to advocate for people with developmental disabilities to have the same basic rights as everyone else – “the right to feel safe in our own home, the right to regular meals, the right to feel like a contributing member of society.”

When did this advocacy change to removing people from their safe homes in supported communities to become isolated?  When did it change to increasing the incidence of crisis oriented care by closing supportive community homes?  When did it change to not listening to the families and guardians of those who cannot speak?  When did it change to discriminate against our most vulnerable – the “Throwaway People?”

I want to know when the identified problems of ” inadequate staff training and compensation, no means of gauging the appropriateness of care, little oversight of such facilities, and no way to bar or punish those who abuse or take advantage of people with developmental disabilities” were corrected.

When were the suggested changes which The Arc and DDC sent to the Governor, the legislature and the Attorney General in 1999 implemented?

  • Allow family or relatives of individuals with developmental disabilities to take civil action in cases of wrongful death
  • Make hearsay evidence admissible involving cases of abuse and neglect of people with developmental disabilities
  • improve client to case-manager ratios (200 clients to one case-manager in 1999 – “the worst in the entire country”)
  • Require annual certification of all providers who receive contracts from DDD and DSHS
  • establish ongoing education requirements for direct-care providers
  • increase provider wages to reduce rampant and constant turnover

“The only way to ensure the basic right is to provide caregivers training and adequate compensation;  state regulators the authority to ensure quality supports and services;  and to call to account people who abuse the system and people within it.”

If you read the advocacy material printed and distributed from The Arc today what you will see at the top of almost any list is to close the supportive communities (Residential Habilitation Centers – RHCs).  This is in total contradiction of what they have written.  This means advocating to move people OUT of their safe homes and communities into isolated homes with little or no oversight, rapid turnover of poorly trained or inexperienced caregivers and adding to the crisis load of our community.

How did this happen?

Mama Bear is Showing Up!

Happy Mother’s Day –

Every one knows how ferocious a mama bear can be protecting her cubs and knows to get out of the way.  I’m feeling like that mama bear right now and getting madder and madder.  Someone is attempting to hurt my child – not just my child but the children of many of us and it’s time to step back or it won’t be pretty.

I’m tired of being nice and playing the game.  I’m tired of DDD case managers denying services to children and adults who are needing services and who are approved for those services yet DDD continues to deny them.  I’m tired of the  DDC acting as if they know what’s best for our most vulnerable citizens yet shunning and censoring information from the experts – parents and caregivers.  I’m tired of so-called “disability advocates” from The Arc chapters behaving as if they care about our most vulnerable citizens and I’m mostly tired of all people from those agencies deliberately causing harm to our citizens.

I can tell you that a DDD case manager wondered why I didn’t restrict fluids from my son so that he would not wet his bed.  This was not just a little wet, this was a monster wetting which necessitated laundering every bit of bedding every day due to being soaked.  This was not a case of simple bedwetting but a case of neurogenic bladder that only relaxed at night so that was the only time he could really empty his bladder – while he was asleep – the only time his body ever relaxed (that is if he did sleep.)

This is the same DDD Children’s manager who I overheard tell my son’s case worker “do not offer them anything.”  That was after a meeting I had with them while he was hospitalized his for the 5th time in Seattle Children’s Inpatient Psychiatric Unit, psychotic and manic.  We had looked at Fircrest for him, we and his healthcare team knew it would be the best place for him – particularly since we had been told that another hospitalization would not be approved.  Our son was 14 and the DDD Children’s manager said “DON’T OFFER THEM ANYTHING?”

What is wrong with this picture?  Whatever it is – it needs to change and I’m doing my best to make changes.  Just as Ed Holen and Sue Elliott from the DDC and The Arc say on their Olympia Insider videos on Youtube “Change is made by those who show up.”

I’m going to be showing up!