National Council on Disability – Employment

The Arc of King County has a representative, known to harass and bully disabled community members and disability advocates speaking as a panelist at the upcoming National Council on Disability Quarterly meeting.

Why is the Arc of King County enabling this abusive person to continue in this role?  Please contact the Arc of King County and ask why they encourage this type of behavior?

PLEASE NOTE CORRECTION SENT OCTOBER 22, 2018 FROM NCD REGARDING CALL-IN PHONE NUMBER – ALSO LIMITS ON PUBLIC COMMENTS – THEY ARE NOT TAKING COMMENTS ON EMPLOYMENT

We apologize for posting the incorrect call-in for tomorrow’s board meeting in our earlier email. Please note the change below.

**CORRECTION**

NCD’s Council Members will meet tomorrow, October 23, in Jackson, MS, to receive presentations on its latest report, “New Deal to Real Deal: Joining the Industries of the Future,” including a consumer panel to discuss it. A lunch break will follow that panel. Following lunch, the Council will receive a series of presentations from a bioethics and disability panel on the topics of genetic testing and gene editing, organ transplant policy, the use of quality adjust life years to limit healthcare, and physician-assisted suicide. Following a brief break, the Council will next receive a presentation regarding involuntary institutionalization as a result of disasters. The meeting will then include a time for public comment on NCD’s bioethics topics, before concluding with a brief period for any unfinished business.

This meeting will occur in Jackson, Mississippi at the Hilton Garden Inn Jackson/Downtown, Triple C’s: Club, Crown, Coronet, 2nd Floor, 235 W Capitol Street, Jackson, MS 39201. Interested parties may join the meeting in person at the meeting location or may join by phone in a listening-only capacity (other than the period allotted for public comment noted below) using the following call-in information:

Teleconference number: 1-800-667-5617
Conference ID: 6973399
Conference Title: NCD Meeting
Host Name: Neil Romano.

CART:
A CART streamtext link has been arranged for this meeting. The web link to access CART on Tuesday, October 23, 2018 is:
https://eur02.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.streamtext.net%2Fplayer%3Fevent%3DNCD-QUARTERLY&data=02%7C01%7C%7C7d1150d77ee243688cda08d6382a42b8%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C636758151489616659&sdata=qMb8Rlq3VyzCNmnOFNhNbAa1uV5%2BFHVtY2ZowthTxVA%3D&reserved=0.

Accommodations:
Those who plan to attend the meeting in-person and require accommodations should notify NCD as soon as possible to allow time to make arrangements. To help reduce exposure to fragrances for those with multiple chemical sensitivities, NCD requests that all those attending the meeting in person refrain from wearing scented personal care products such as perfumes, hairsprays, and deodorants.

AGENDA: The times provided below are approximations for when each agenda item is anticipated to be discussed (all times Central):

Tuesday, October 23

9:00-9:15 a.m.–Welcome and introductions
9:15-9:45 a.m.–Executive reports
9:45-11:45 a.m.–“From the New Deal to the Real Deal: Joining the Industries of the Future” national disability employment policy and  consumer panel
11:45 a.m.-1:15 p.m.–LUNCH BREAK
1:15-3:15 p.m.–Bioethics and disability policy panel
3:15-3:30 p.m.–BREAK
3:30-4:15 p.m.–Involuntary institutionalization as a result of disasters policy panel
4:15-4:45 p.m.–Town hall to receive comments about bioethics and disability (The five areas NCD is conducting research on include: organ transplants; medical futility; Quality Adjusted Life Years; physician assisted suicide; and genetic testing.)
4:45-5:00 p.m.–Unfinished business
5:00 p.m.–Adjourn

Public Comment:
NCD will receive public comments limited to those regarding NCD’s bioethics and disability research areas–organ transplants; medical futility; Quality Adjusted Life Years; physician assisted suicide; and genetic testing. To better facilitate NCD’s public comment, any individual interested in providing public comment is asked to register his or her intent to provide comment in advance by sending an email to PublicComment@ncd.gov with the subject line “Public Comment” with name, organization, state, and topic of comment included in the body of your email. Full-length written public comments may also be sent to that email address. All emails to register for public comment at the quarterly meeting must be received by 5  p.m, EDT, Tuesday, October 22, 2018. Priority will be given to those individuals who are in-person to provide their comments during the public comment period. Those commenters on the phone will be called on per the list of those registered via email. Due to time constraints, NCD asks all commenters to limit their comments to three minutes.

More Information:
If you have any questions about this meeting of the Council, please contact Anne Sommers at asommers@ncd.gov.

 

Screenshot (63)

Tune in on Tuesday, October 23, 2018 at 7:45 AM to listen to the panel (CALL-IN NUMBER:  800-667-5617, Conference ID: 6973399; Conference Title: NCD Meeting; Host Name: Neil Romano) have a discussion regarding

National Disability Employment Policy, From the New Deal to the Real Deal:

Joining the Industries of the Future

I am anxious to hear the comments of Shaun Bickley, representing Arc of King County, regarding his activism in Seattle which led to the elimination of the special certificates.

I wonder how Bickley will address the fact that he withheld critical information from the City Officials, falsified information, negated the research and report done by the National Council on Disability, bullied and harassed other disability self advocates and community members, refused to allow public comment on city websites of the Seattle Commission for People with Disabilities or that 7 of the 8 employees in Seattle personally affected by this law had their work hours reduced.

Will Bickley be accountable to the problems that have been raised by community members?

NCD Quarterly Meeting Agenda October 2018 – Shaun Bickley, Arc of King County, as panelist

I will be submitting a public comment – if you are so inclined to do so, the information from NCD is provided below.

 

 

PUBLIC COMMENT: To better facilitate NCD's public comment, any 
individual interested in providing public comment is asked to register 
his or her intent to provide comment in advance by sending an email to 
PublicComment@ncd.gov with the subject line ``Public Comment'' with 
your name, organization, state, and topic of comment included in the 
body of your email. Full-length written public comments may also be 
sent to that email address. All emails to register for public comment 
at the quarterly meeting must be received by Monday, October 22, 2018. 
Priority will be given to those individuals who are in-person to 
provide their comments during the public comment period. Those 
commenters on the phone will be called on per the list of those 
registered via email. Due to time constraints, NCD asks all commenters 
to limit their comments to three minutes. Comments received at the 
October quarterly meeting will be limited to those regarding NCD's 
bioethics and disability research areas--organ transplants; medical 
futility; Quality Adjusted Life Years; physician assisted suicide; and 
genetic testing.

Protect Olmstead Report Language

Deinstitutionalization – The Committee notes the nationwide trend toward deinstitutionalization of patients with intellectual or developmental disabilities in favor of community-based settings.  The committee also notes that in Olmstead v. L.C. (1999), a majority of the Supreme Court held that the Americans with Disabilities Act does not condone or require removing individuals from institutional settings when they are unable to handle or benefit from a community-based setting, and that Federal law does not require the imposition of community-based treatment on patients who do not desire it.  The committee strongly urges the Department to factor the needs and desires of patients, their families, and caregivers, and the importance of affording patients the proper setting for their care, into its enforcement of the Americans with Disabilities Act.”

Although this language simply requires the Department of Justice to adhere to Olmstead when enforcing Olmstead, some federally-funded organizations that favor serving everyone in community settings without regard to individual choice and need, have somehow found this report language threatening and are now urging the Senate to reject it when it takes up the Senate Commerce, Justice and Science, and Related Agencies Appropriations bill as early as this coming Monday.”

Your letters and support are needed NOW to inform your Senators of this issue.  It is very simple – just follow this link:

VOR – Protect Olmstead Report Language

 

Please take action before it is too late!

THANK YOU!

 

Text above taken from the VOR website

The politically incorrect idea of bringing congregate and community care together

Hopeful Opportunities are springing up – let’s support these efforts!

COFAR blog

Two initiatives in two separate states call for something that would seem to make perfect sense — expand the missions of congregate care facilities for the developmentally disabled, and merge them with their surrounding communities.

In one case, the State of Delaware is proposing to expand services available at the Stockley Developmental Center by offering medical and dental care now available there to developmentally disabled and under-served persons living in the community.  A Delaware state task force has also called for considering an indoor community sports center or outdoor playing fields at the Stockley facility; and opening up a therapeutic horseback riding program and a therapeutic pool at Stockley to the surrounding community as well.

Like most of the developmental centers in Massachusetts, the Stockley Center sits on hundreds of acres of largely unused land, and currently serves only a small fraction of the hundreds of people who lived there four decades…

View original post 1,026 more words

“Deathmaking”

I wrote the letter below to the National Council on Disabilities for their meeting this past week. In doing research for this, I came across much information on “Deathmaking” and am horrified by what I have been reading. But on the brightside, it has also led me to the works of Dr. Wolf Wolfensberger, Syracuse University and Social Role Valorization.  There is a wealth of information here which is critical to our understanding of living with people who have developmental disabilities.

Letter addressed to the National Council on Disability (December 4, 2013):

In the recommendations to close and consolidate the Intermediate Care Facilities, please keep in mind that these are medical/healthcare facilities. These medical facilities provide not only nursing and medical care but dental, psychological, education, vocational and social/recreational in addition to habilitation for building skills for activities of daily living.

The North American Industry Classification System (NAICS) is the standard used by Federal statistical agencies in classifying business establishments for the purpose of collecting, analyzing, and publishing statistical data related to the U.S. business economy. In reviewing the NAICS, it is clear that they have a better understanding of the supports and services needed by our citizens with developmental and intellectual disabilities than many organizations which claim to advocate for those with DD/ID. As you can see from the excerpt taken below from the NAICS website published by the U.S. Department of Commerce. (http://www.census.gov/eos/www/naics/)

“Sector 62 — Health Care and Social Assistance

The Sector as a Whole

The Health Care and Social Assistance sector comprises establishments providing health care and social assistance for individuals. The sector includes both health care and social assistance because it is sometimes difficult to distinguish between the boundaries of these two activities. The industries in this sector are arranged on a continuum starting with those establishments providing medical care exclusively, continuing with those providing health care and social assistance, and finally finishing with those providing only social assistance. The services provided by establishments in this sector are delivered by trained professionals. All industries in the sector share this commonality of process, namely, labor inputs of health practitioners or social workers with the requisite expertise. Many of the industries in the sector are defined based on the educational degree held by the practitioners included in the industry.”

What has happened is that those who claim to advocate for people with ID/DD have only looked at the social assistance and have ignored the healthcare aspects. As you can see from Sector 62, those with ID/DD are on a continuum and we must provide supports and services for ALL people on that continuum – not just those who are “higher functioning”

This method of advocacy is tantamount to a new genocide -or “deathmaking” as described by Wolf Wolfensberger (2005) . This means that denying access to needed healthcare, separating people from their homes and communities leaving them without help and protection, imposing a dying role on people or destroying their will to live are all examples of a “new genocide” which many are imposing upon our most vulnerable citizens.

This is a crime – please reconsider your policies regarding “deathmaking.”

When does “choice” mean “restriction”

Many things are changing in the name of “choice” but is this all really choice or is it putting more restrictions on people?

By micromanaging definition of words such as “community” and “employment” our government and advocates are actually reducing the alternatives by creating restrictions on how funds are spent.  Reducing alternatives which greatly benefit many of our loved ones means they lose the ability to make choices.

Having these strings attached to federal funds, funds which are critical to our most vulnerable citizens, forces them into situations which may not be in their best interest.  Is this what choice and alternatives are about?

The fact of the matter is that many do want to live in community settings with similar people, share supports and be able to walk independently outside their home to a friends, an event, or to shop. The other fact is that by eliminating “sheltered workshops”, without replacing with an alternative, forces the people who work in those jobs to be shuttered away in a home, isolated from their community.  Is this what choice is about?

Chris Collins, R-Clarence, represents the House of Representatives’ 27th District, which includes about half of Ontario County, New York, writes about this issue with regards to sheltered workshops.

“The federal government is not in a position to direct all disabled people to join competitive employment. Ultimately, the choice to stay in a workshop should be an employment option for the disabled who are not yet ready to make their transition to a competitive environment. Parents and providers are concerned about finding jobs in this tough economy, especially when non-disabled unemployment rates remain high and stagnant.”

Read more: http://www.websterpost.com/article/20131126/OPINION/131129736/?tag=1#ixzz2mH2WjH46

“Choice of employment” in this situation means the choice to not work since in reality many of these people would be unemployable in a competitive employment market.  There are not enough funds to provide the needed support for these folks to hold a job in a competitive job market and the reality of the situation is these folks will be left  with nothing – is that choice?

 

Please support real choice and real alternatives!

 

Performance Audit – Second Flaw

Washington State Auditor’s Office published the Performance Audit “Developmental Disabilities in Washington:  Increasing Access and Equality”.  It is very unfortunate that the Auditor’s researchers did not understand the issues and what the data represented.  Many significant issues were left out or misrepresented in this report.   There are many flaws in this report.

This flaw relates to the inclusion of and information provided with the National Core Indicators (NCI).  The National Core Indicators are a project of Human Service Research Institute (HSRI) one of the two agencies contracted by Washington State to perform this audit.

The audit states that the data from the NCI is from the years 2009-2010 and the “National Core Indicators (NCI) provides outcome measures used by 25 states to assess the performance of state developmental disabilities service systems and the experiences of individuals receiving support.”  The data reported in the Audit charts does not match with the 2009-2010 data which is recorded in the NCI reports.  Also, there are only 19 states involved in the survey for the year 2009-2010.  Please, as auditors, it is important to get your information and sources correct!

“To understand Washington’s performance from the perspective of those it serves, we compared Washington’s results for National Care Indicator (NCI) outcome measure surveys to other states’ results.”  (Kelley, 2013)  This quote leads one to believe that the NCI provide an overall view of the outcome measure by those who Developmental Disabilities Administration (DDA) serves.

Unfortunately, this if far from the truth.  Those who live in the supportive communities of the Residential Habilitation Centers or in nursing homes are not surveyed.  In addition to excluding this population, the survey itself is in two phases.  If a person is unable to answer the questions in phase 1, they are eliminated.  Those remaining are advanced to phase 2 of the survey. Depending upon the year the survey was administered and if proxy answers were allowed, the actual percentage of valid surveys changed.  For the year 2009, an average of 68% were allowed from phase one, of which 98% of those were valid in phase 2.

This means that only 61.7% of those surveyed had valid responses in the year 2009-2010.

In addition to the issues of percentages of survey answers which are valid, it needs to be noted that NCI uses a minimum sample size of 400 to be valid. They do include states which did not meet this number for a 95% confidence level.  One needs to understand this when comparing states and when looking at the national average.  In 2009-2010, 4 of the 19 states did not meet this sample size to ensure a 95% confidence level but were included in the national averages.

Washington State survey had about 623 for phase one and 395 for phase two – which means that about 63.4% of the surveys were valid.  This is difficult to accurately count due to inaccurate information provided from the audit and limited availability of data from NCI.

These surveys are not helpful, particularly when they are not reported accurately, to assess the needs of our population with ID/D.  Excluding whole segments of this population from even participating is an indicator that those who cannot speak for themselves are not valued.  All people matter and all need to be heard – stop excluding and dehumanizing those who are unable to communicate by speaking.  Just because their voice cannot be heard (or understood) does not mean that they cannot chose and make decisions by other means.

We need to listen to those who cannot speak for themselves too!

National Core Indicators – charts which highlight the misrepresentation used by the State Auditors.

Human Services Research Institute. (2009-2010). NCI Charts. Retrieved from National Core Indicators: http://www.nationalcoreindicators.org/charts/

Kelly, Troy. (2013). Developmental Disabilities in Washington: Increasing Access and Equality. Permormance Audit Report No. 1009938, Washington State Auditor.

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Designing a Community

I was so glad to read the most recent posting in The Autism Blog entitled “Designing a Community for Families Living with Autism.”  This article which describes a community which families would like for their children describes inclusive, supported communities.  Many of the so-called “institutions” are actually on campus communities which are set up very similarly to the designed community in these parents dreams.

This is a major problem since our vocal Developmental Disability Advocates who steer policy making and laws (Developmental Disabilities Council, The Arc Chapters, National Council on Disabilities, Administration on Intellectual and Developmental Disabilities) do not support these parents dream for their children.  We hear form the above mentioned organizations that people should not live in campus type settings, they need to be dispersed so that they are “included” in community.

 

In reality, when people with intense support needs are dispersed into free-standing houses far from their friends and supports, they are not included at all – they are more likely imprisoned in that home.  There is no freedom to walk outside safely, there are restrictions and locks which prevent freedom and choice.  This is not person centered at all but policy driven without input from families – the real experts in what makes community for them.

The so-called DD Advocates will say that families do not want campus communities but have they asked and listened to what families have said.  I know they haven’t but we need to get them to listen to our expertise in what is best for our children.

 We are the experts and they need to listen to us too!