Olmstead Anniversary

The 1999 US Supreme Court Decision  Olmstead was monumental.

As is written in Disability Rights Galaxy, there have been many things written about this historic decision.

The Decision is very good.  Unfortunately, many have used the Olmstead decision as a basis to consolidate and close institutions.  Olmstead is not about closing institutions – it is about choice, least restrictive environment and expanding community resources.  The expansion of community resources did not mean close institutions and force people to unwillingly leave their homes.  Olmstead clearly states that for some, the institution is the least restrictive environment.

 

I have posted a comment to the Disability Rights Galaxy – I do not think that it will be approved since it points out an issue which Mark Stroh, Executive Director of Disability Rights Washington, does not want to concede.   So I am posting my comment here.  If Mr. Stroh is able to find where I am wrong, I would gladly know where it is.  I have read and re-read both the decision and the opinions many times and I have not come across anything that mandates closure and consolidation of institutions and moving people against their wishes.

 

Yes, this was a monumental decision.  I’m very sorry to see though that many have misinterpreted the decision to say that people need to be “deinstitutionalized”

 

The decision honors the individual choice and honors the choice for that person to live in the least restrictive environment for that person.  It also says that for some, the institution may be the least restrictive environment.

 

There is no where in this decision that says all people must move out of the institutions and into the “community” nor is there anything that says states need to consolidate and close institutions.

 

If you find something in the decision which contradicts what I am writing, please point out the quotes to me.  I have read the decision and opinions several times and have not come across any recommendations to close institutions and move people against their will.

Do you know what you advocate for?

As a parent who has survived a revolving door of crisis after crisis and of a child who was given a second chance at life by being allowed his right to admission into a Residential Habilitation Center, I write this letter with hopes and dreams but also with sadness.  If one person’s life is saved by this, it’s worth it and I do know that I become a broken record – but it is necessary to be heard.

When our child lived at home we had no other life but trying to keep him safe and healthy.  I was not able to attend any meetings or participate in  advocacy beyond trying to work with DDD to approve the “allowed” services and support on the waiver he was on.  After several years of fighting just to get him prescribed supplies (DDD denied them as ‘unnecessary”) I turned to The Arc.  The Arc was no support at all – I was told to call my legislator.  Well, as a parent in crisis, that recommendation seemed ridiculous (now I know different) but I think that someone from The Arc could have helped me – they had no interest in helping me or our son.

Up until then, I had assumed that The Arc and the other DD advocates really did have the best interest of those with Intellectual Disabilities (ID) in mind.  I now know differently.  I see the false advocacy and hidden agendas and mud slinging that is done in addition to the personal assaults and censorship that allowed.  This letter will name specific people  – a practice that I have realized that I need to do in order for them to have some accountability to our community.

Why aren’t these advocates held accountable to being responsible stewards of our public resources?  They are failing us.  It’s time that these folks answered questions and responded to inquiries, rather then writing personal attacks to and about the person who asks the questions.  I would gladly discuss the issues with them or answer their questions about the research I have done or the data I have collected – they are not interested in even looking at though.

Mark Stroh – Executive Director of Disability Right Washington 

Sylvia Fuerstenburg – Executive Director, The Arc of King County

Senator Adam Kline

Developmental Disabilities Council

Please ask these people to:

1.  Read the US DD Act

2.  Read the 1999 US Supreme Court Decision Olmstead

3.  Review the data regarding cost of care for people with high care support needs. (https://becausewecare1.com/2012/06/11/will-negligence-become-the-new-standard-of-care/)

4.  Defend the research in the Report entitled “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” – also, if you know anyone who does any research, have them take a look at this and see if they can defend the author’s findings.  Let me know what you find out.

5. Ask them if they understand the significance of the Support Intensity Scale and the DD Assessment which looks at activities of daily living. (https://becausewecare1.com/2012/06/09/to-the-arc-and-other-community-advocates-for-people-with-intellectual-disabilities/)

6.  Have them review the non profits and financial statements which work with ID clients in our state

7.  Have them look at the issues of, lack of stability and sustainability of our caregivers, which directly affects the health and safety of our loved ones. (https://becausewecare1.com/2012/06/14/how-can-we-have-stability-and-sustainability-with-up-to-45-staffing-turnover/)

I’m not interested in hearing the same rhetoric from The Arc Advocates and their constituents – that information is inaccurate and misleading.  I’m interested in speaking with those who actually would like to know what the data means, where it came from and what it represents.  Those in The Arc do not know this information.  DRW does not know this information. Community Residential Service Association does not know this information.

 It has been shared with all of these organizations but they will not acknowledge the information because it does not support their agenda.

I can say that I have appreciated conversations which I have had with Sue Elliott, Executive Director of The Arc of Washington.  She has been candid and has indicated that yes, I am correct in stating that for those with high support needs the cost of care would be more expensive in community settings.  The Arc, though, believes that no one should live in any congregate care and that is what they advocate for.  It is fine to advocate for no congregate care but in so doing one also has to use accurate data and say that they do not agree with congregate care but it will cost more.  They are not doing that – they are giving false information to support their advocacy.  This is very detrimental to ALL with ID.

Please, I welcome questions and concerns.  I would appreciate feedback and will get back to you.  I have researched much of this data and have the public records and citations of all resources.

Please share with those who may need to know or understand this information or have them contact me.  I would be very happy help anyone understand the complexities of caring for a person with ID who has very high support needs.

Will Negligence become the new standard of care?

 

This chart illustrates the comparison of the cost of care for similar clients who have high support care needs of 24 hours/day.  By continuing to be misled by many who claim that they can better serve these residents in the community and at a lower cost, they have no data to support that claim.  The reason is because it is impossible.

To move these clients (who do not want to be moved anyhow) to a different environment assuming that thier care cost would go down is a form of abuse and neglect.  Is this a choice which you would choose for your loved one?  I would hope not.  It’s certainly not a choice that I will choose.

What is happening though is that we are not given the choice – this “choice” is being made for us and our loved ones by those who do not have a clue about how demanding it is to care for some of these residents.  They base their information on caring for those with much lower support care needs.

When taking a look at the chart below, you can see the average support care needs which each agency reports.  Why are the advocates who care for residents with much lower support care needs able to manipulate our legislators and citizens into believing that they also know what is best for and how best to care for our residents with the higher support care needs?  This is ludicrous.

 

 

It is time that the advocates who say they are advocating for those with developmental and intellectual disabilities not only listen to people who care for those with high support needs but also re-read the US DD Act and the 1999 US Supreme Court Decision of Olmstead to understand that by continuing on the path of advocacy which they are on does not only cause more crisis and loss of services, it does not uphold the decision of Olmstead or the US DD Act.

It’s time that the family members, community members and caregivers of those with the highest support needs are allowed to be included in Stakeholder discussions and decisions.  What happened to “nothing about us without us” – does it not apply to these folks?

 

2011 cost of care charts  Please read this report for data, citations and more information

Shame on DRW (Disability Rights Washington)

AS an advocate for our community members with developmental and intellectual disabilities with the highest support needs, I have been thoroughly ashamed and disappointed in the position of Disability Rights Washington (DRW).  DRW is supposed to be the protection and advocacy agency for these very citizens yet I see they are actually doing much harm to this population which has the greatest need.

DRW operates a blog entitled DisAbility Rights Galaxy.  One would think that they would welcome comments but I believe they only welcome comments which they find agree totally with what they have written.  I find it interesting that Mark Stroh, the editor, refers to the following rule as to why my comment will not be posted:

Comments we know or suspect to be inaccurate which are presented as factual. We will error on the side of caution here. As an unknown wise person once said, you are entitled to your own opinions but you are not entitled to your own facts. However, we do not guarantee the accuracy, completeness or usefulness of any information in the comment section and expressly disclaim any liability for any information posted, or websites linked, to here.

as a reason that posts that I have written will  not be allowed and sit in limbo of “awaiting moderation” forever.  I think what he means to say is “our opinions are facts and therefore if anyone questions them they are only stating their opinion which is not fact since it does not agree with our “facts.”

The most recent issue of conern is that regarding “Sheltered workshops”  I have copied and pasted the original posting from Disability Rights Galaxy and my comment which is still in moderation and will not be posted.

Report: Sheltered workshops “exploit” people with disabiliites (sic)

Andy Jones | April 8, 2012

The National Disability Rights Network released a new report April 3 detailing how federal funding priorities entice states to funnel people with disabilities into sheltered workshop programs that segregate them from the regular workforce.

Opportunity Ahead Road Sign

People with disabilities want inclusive jobs

The report, titled “Beyond Segregated and Exploited,” is an update on ascathing report, released by NDRN in January 2011, that called for an end to subminimum wages and poor working conditions for people with disabilities.

“What we found was a system that does not provide truly meaningful employment opportunities for people with disabilities and in many instances exploits theirdisability for the financial gain of employers,” said NDRN executive director Curt Decker in the most recent report. “We found a system that traps these workers in endless “training” programs that prepare them for nothing and often leaves them impoverished. Worse, federal laws and programs as well as many provider organizations within the disability service system help facilitate this travesty.”

States receive money for sheltered workshops, separate work programs meant to provide employment for people with disabilities, from the Centers for Medicare and Medicaid Services and the Rehabilitative Services Administration. However, these programs are not balanced with funding for programs to assist individuals with transitioning into the workforce.

For example, in Ohio, where 97 percent of the state’s disability employment funding is directed toward sheltered workshop programs, more than 5,200 workers are earning an average of $1 an hour. As detailed in a series of articles by the Columbus Dispatch, these programs receive almost no oversight. Despite havimg the largest number of individuals employed in sheltered workshops nationwide, the state’s 40 percent poverty rate for people with disabilities is among the nation’s highest.

“Despite CMS’ and RSA’s expressed preference for integrated employment, the heavy flow of Medicaid dollars spent on prevocational services and RSA’s policy allowing workers to get those services in sheltered settings does not support the call for community-based employment,” the report states.

Federal law allows sheltered workshops to employ pay individuals less than the minimum wage under a Great Depression era law designed to bolster employment for people with disabilities.

The report provides an overview of a number of efforts by Protection & Advocacy organizations around the country to improve conditions and opportunities for people in sheltered workshops, including a class action lawsuit filed in January by Disability Rights Oregon which argues that Oregon’s system of sheltered workshops violates the Americans with Disabilities Act by unnecessarily segregating people with disabilities.

The report calls for an end to federal and state funding to sheltered workshops that segregate people with disabilities from the workforce, the creation of new tax incentives for employers to hire people with disabilities and increased labor protections and enforcement.

Posted April 11, 2012 at 3:35 pm | Permalink

Your comment is awaiting moderation.

It is true that Sheltered Workshops do not train people for “truly meaningful employment” and there may be people who work or spend time in these facilities who could benefit from other opportunities. I fully support employment for people with developmental disabilities but there are also many misconceptions about sheltered workshops which advocates publicize which simply are not true.

There are benefits to sheltered workshops and they should not be banished. Maybe if the name was changed to something else and the pretense of “training” for another job was removed, they might be better accepted by some disability advocates.

Regarding the pay – most of these workshops do not pay by the hour – they pay by piece work. If a person decides to not work but socialize all day – they won’t get paid for the “work” because they are not working. Yet, if they sit and do some work for awhile, get some things done, take a social break for a couple of hours then do some more work, they will get paid for the work they have done.

For many, the workshops provide not only employment but a pattern to their day, personal support, socialization, community involvement and more. If this is taken away without a replacement for these supports and relationships what are the people left with?

We are finding this every day with more and more supports being taken away. Many are now left with nothing. There are few day programs and if people are able to find a supported employment situation that time is only for a few hours a week. Who supports the person for the remaining hours?

With the turnover rate about 40% for caregivers in supported living homes, these people will then be left at home – that means more people to care for in their homes and fewer caregivers to care for them.

I’m sorry but for me that spells disaster.

The letter below is the first letter that I sent to inquire about the state of limbo.  I did not receive a response.  Today, when I again emailed Mr. Stroh, he sent me the rules and highlighted the informaion above as the reason that my comment will not be allowed.

To: mstroh@dr-wa.org
Subject: Disability Galaxy posting
Date: Sat, 21 Apr 2012 18:15:13 -0700

Dear Mr. Stroh,

I’m curious about the timeline for having a reply to a posting moderated?  I posted the message below on April 11, 2012 and it is still “awaiting moderation.”  This is not the first time that a message that I have written to clarify some issue has been in this state of limbo for an extended period of time.

I understand that my letter does not necessarily support the posting on Disability Galaxy but I do believe that it is in the best interest of all to read other opinions about the issues.  Without a full understanding of how these issues affect our families and loved ones, how are people going to be fully informed.

Thank you very much,

 

I would love to know what Mr. Stroh finds so offensive or inaccurate in my comment.  Of course I do not believe that a sheltered workshop is the best place and they do not train workers for other jobs.  Yet, I do believe that sheltered workshops serve a purpose.  Just ask families of people with very high support needs – the people who now have no meaningful activities or structure to their day – ask them what they think are benefits of sheltered workshops.  DRW may be surprised but one would never know because these opinions are never allowed to be shared since they do not agree with the “facts” of DRW.

My response this morning to Mr. Stroh:

Thank you.  This is the right of your agency but I find that the editorializing that is done is harmful to those who DRW claims to advocate for.  This is a very sad state of affairs.  My posting is not inaccurate but it does not agree with your opinion and since this site is yours, you are welcome to post your opinion as fact but then do not allow others to question it.  This is not democracy.

I’m so sorry that your agency which is supposed to be the P&A agency for our vulnerable citizens is not living up to the job.

This is an example of the divisive advocacy and silencing of those who are very involved and know what it’s like in the “trenches”. We are not respected or valued for our opinions, insights and concerns. The very concerns which Olmstead upholds.   If these agencies are there to be the protection and advocacy agencies one would hope that they uphold the 1999 US Supreme Court Decision Olmstead which clearly states the individual has choices.  These choices are being taken away by those who believe their OPINION is fact.

It might be wise for Mr. Stroh to go back and read the Olmstead decision.  He may be enlightened by what it actually says.

Again, I will repeat my message to Mr. Stroh – I’m sorry but for me that spells disaster.