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.

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!

Closing Institutions

Many of our supportive communities are being destroyed.  People are being evicted from their homes and dispersed to isolated housing in the name of “inclusion.”  The reason this is happening is because people and agencies are being misguided with inaccurate information, both with regards to costs and with respect to the 1999 US Supreme Court Decision Olmstead.

It is for this reason that I am providing this information in my attempts to clarify what the costs are and what choice means to those of us who care for our loved ones who have  limited abilities to make their own safe choices.

When looking at costs, direct care costs are the most logical cost to compare since this is a cost that is needed in all types of supportive residential settings.  This is the basic cost and the one that is most often reported for the cost of care in community residential settings.  The costs reported for supportive communities (Intermediate Care Facilitates/Intellectual Disabilities (ICF/ID), Nursing Facility/Intellectual Disability (NF/ID) and Residential Habilitation Centers (RHC) ) are generally very comprehensive costs and by the very definition will be more expensive than the direct care costs reported for community settings.  Below are the lists of services that are included in the comprehensive costs for the supportive communities.

Looking at only direct care costs across many residential settings and support needs – there are two very clear facts that can be seen:

1.  The cost of care increases as the support needs for the person increases – those needing more support have a higher cost for direct care.

2.  The Economies of Scale come into play – in supportive communities, even when the support needs are high, the cost of direct care is lower per person, on average, than in isolated homes.

In Washington State, this became especially evident with the closing of Frances Haddon Morgan Center, one of our state’s RHCs.  In addition to looking at the Economies of Scale in action with the downsizing and closure of one of our RHCS, we were also able to obtain the average daily cost of care for community residents with the highest support needs. The chart below illustrates that as the size of community decreases, the average cost per resident for care increases.

economies of scale

2010 direct care costs

2011 direct care costs

2012 direct care costs

The cost difference between 49 residents and 9 residents for Frances Haddon Morgan Center is astounding.  Moving these residents from their homes proved disastrous for several of these residents, death to one, hospitalizations and crisis to others – all for what was assumed to be a cost saving measure.  This experiment failed on many levels.  It’s time to actually look at the real data, understand what the data represents and move forward.

cost centers 1 cost cetners 2

Scattered, dispersed housing = Community?

A letter from the National Council on Disability (NCD) was published urging the US Housing and Urban Development (HUD) to swiftly comply with the US Supreme Court Decision of Olmstead.  This is great – except the interpretation of Olmstead is incorrect and the NCD assumes that independent choice is the apparent optimal  goal for people with intellectual disabilities (ID).

I cannot disagree more with the Federally funded National Council on Disability, which states they represent and advocate for our loved ones. My response letter is available  here.  (May 21 letter to HUD)  Community is not a place but relationships.  NCD does not consider relationships and what those relationships mean to many in supportive communities.

We need to define choice and what that means to various people.  Those with severe intellectual disabilities with or without co-occurring psychiatric disorders are by the very definition of their condition, not able to make informed choices.  If independent choice is the apparent goal, would an independent choice of someone with severe ID and psychiatric disorder by wise and safe?  I would tend to think not.

When thinking about choice and housing it is critical to understand what type of choice is desirable – independent or supported.  One should not presume that independent choice is always the most desirable outcome.  “A well-supported choice leading to selection of a wise alternative may be preferable to a more independent but ill-informed choice that results in problems.” (R.J. Stancliffe, 2011)

With this distinction about the definition of choice and what may be safe for each individual, we then can examine Olmstead and the arguments of many regarding community housing for those with ID.

The other very concerning issue other than that of “choice” is what about the caregiver.  Does the NCD not understand that many of these people who they so want to make independent choices often need 24 hour live in and AWAKE care?  If all these people choose to have their own house, who will be there to care for them?  Does the NCD not realize that we are already in a crisis trying to find qualified caregivers for those who may live in supported communities or group homes – how will we be able to safely staff isolated and dispersed homes?

Scattered and dispersed housing does not a community make!

Let Your Voice Be Heard

The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
NCD’s quarterly meetings are open to the public. People and organizations that represent the interests of people with disabilities are encouraged to attend these meetings, in person or by phone. The next NCD meeting is April 22 – 23, 2013 in Washington, D.C. The focus of this meeting will be NCD’s future “Policy Roadmap.” Families living in the D.C. area are encouraged to attend in person or you can join the meeting by phone (download the agenda, with location and phone details, here).

 

Next Phone & In-Person Public Comment Opportunities

April 22 – 23, 2013 during the NCD Quarterly Meeting

NCD will host two open public comment periods at its upcoming quarterly meeting on April 22-23, and we’d love for you to share your insights with us about emerging issues or other concerns on which you believe NCD should focus its attention.

For the two open public comment periods, statements will be received on any topic on a first-come, first-serve basis by phone and in-person. The first 30-minute open session is Monday April 22, from 4:45 P.M. until 5:15 P.M. ET and the second open session is Tuesday April 23, from 11:45 A.M. until 12:00, noon ET.

On Tuesday, April 23, NCD will hold an additional public comment period from 9:30 – 10:00 A.M. ET, reserved for in-person comments only regarding recommendations for NCD’s engagement on the UN Convention on the Rights of Persons with Disabilities (CRPD).

If you are interested in giving public comment, you will be asked to provide your name and organizational affiliation, if applicable, and to limit your comments to three minutes so we can hear from as many people as possible (for this reason, it’s advisable to write out what you intend to say).

NCD’s quarterly meeting is open to the public, and interested parties may join in-person or by phone in a listening-only capacity (with the exception of the public comment periods) using the following call-in number: 1-888-727-7630; passcode 5450168. If asked, the call host’s name is Stacey Brown or Jeff Rosen.

You may also provide public comment at any time by sending your comments in writing to Lawrence Carter-Long, Public Affairs Specialist, at LCarterLong@ncd.gov, using the subject line of “Public Comment.”

 

NCD April 2013 Meeting Agenda

 

NCD – Deinstitutionalization Delusions

Dear National Council on Disability,

As a healthcare professional and advocate for our most vulnerable citizens, I ask that the National Council on Disability rethink your position regarding deinstitutionalization.

The council is advocating for negligent care by pushing forward with deinstitutionalization.  Not only is this removing choice from these citizens (as guaranteed under the 1999 US Supreme Court Decision Olmstead) but also acting in violation of the US DD Act.

Supportive communities offer comprehensive care for our citizens with the highest support needs and most complex care.  These communities (which unenlightened or inimical people call institutions – I assume because they are unfamiliar with these communities or people who have their homes in these communities)  are homes to many of our loved ones.  Living in a community, sharing services and supports, is a very cost effective method to care for those who have a high cost of care.

Moving these people to dispersed homes, isolating them from family, friends, caregivers and healthcare providers in the name of “deinstitutionalization” makes a mockery of advocacy.  It is the exact opposite of what an advocate should do.

These dispersed homes often have unstable, inadequate staffing ratios and staff who are not trained well.  There is little coordination of care leaving the vulnerable person at higher risk for crisis care.  When care is finally given, generally these people have more advanced problems which require longer hospitalizations than if they had been managed with coordinated care which was accessible.  Promoting this type of “care” is promoting negligence.

When a person is totally dependent on another person (and often a paid provider) to provide all care a

nd assist in all activities, what happens when there is no provider who shows up to work? When an unfamiliar, untrained provider “fills in”? When the provider does not speak your language? What happens if a person wants to go outside or on a walk but there is not enough staff to go on an outing and also stay home to care for a housemate?  People become isolated and imprisoned.What happens is people do not see them anymore.  When our vulnerable citizens are not seen they are forgotten, the risk of abuse greatly increases.  When there is no one watching, no oversight, no one even knows they are there, people’s lives are destroyed.  This is what happens.

Is the deinstitutionalization movement aimed destroying these people’s lives one by one, hoping no one will notice?  If people who lived in a supportive community were dispersed, we wouldn’t have to see them or deal with them.  Is that what this is about?  It appears that way to me.

Supportive communities provide safe environments which are sustainable, employ a wide variety of profess

ionals who are specially trained and must meet annual standards of care.  There is oversight which is monitored and there are clear standards which must be met.  Why would one deny a person the right to safe, appropriate care?

Assuming dispersed homes are a better environment for many of these people is a false assumption

.  Take a tour of not only supportive communities but also dispersed homes, learn about the caregiving staff, learn about access and availability of healthcare, dental care, therapies, recreational and work opportunities before making a decision about what you think would be best for someone you do not know.  Listen to the people who know, love and care for these citizens.  They are the experts .  The experts are saying that we need supportive communities to best care for some of our citizens who are the most vulnerable.  Denying them this choice is not only inhumane but against our laws.

I know what I’m talking about.  My 18 year old son has thrived since being able to move to a supportive community at age 15.  He had been cycling in and out of the hospital with many complications due to a dual diagnosis of developmental disability and mania/psychosis.  Since moving to his community he has not been hospitalized once.  He has the supports he needs to be stable and he loves his home.

My son was honored as a member of the Shorecrest High School Homecoming Court this past Fall. (S

horeline Public School )   Far from being isolated he is well known in his community being very active in ma

ny recreational programs.  Living in a supportive community has enabled him to contribute, belong and participate in our community at large.

Thank you very much,

Cheryl Felak, RN, BSN

HOMECOMING 1

Because We Care – Beyond Inclusion

Attachment below  is just a “sample” list of actual citations from Licensed Adult Family Homes for p

eople with Developmental Disabilities in Washington State.  This list is FAR from complete and it is shameful the abuses and negligence which our citizens are subjected to.  It is very disturbing to know that this is probably only the tip of the iceberg and that many of these are repeat, uncorrected offenses with little or no punishment.

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

 

National Council on Disability – Toolkit for Disaster

The message below was forwarded by an advocate for a continuum of care.  These are the contacts for those in Washington State –  People from every state should write their representatives to ensure that our most vulnerable are treated fairly and with human dignity – not negligence.

PLEASE ACT NOW!  Please use this email to send a letter to the National Council on Disability   PublicComment@ncd.gov

National Council on Disability (NCD) is a federally funded organization advising the Administration on Disability Issues.  NCD has   launched an all – out attack on facility care (institutions).  They propose the closure of all facilities over 3 beds.  They have even created a Toolkit for community advocates to follow in order to affect closures. They refer to deinstitutionalization as “unfinished business”. To the best of my knowledge, we have never had a representative of this organization visit any of our RHCs.  These are the people advising President Obama and Congress regarding the supports & services needed for the most vulnerable. If this group cannot represent both sides of the care question (institutions and community) they should not receive federal funding.

With the above in mind, please write, fax, telephone or e-mail the NCD regarding their position on congregate care.  Tell them our loved ones, living at the RHCs, are unable to receive the supports & services they need other than in our facilities.  The quality assurance within the community must be brought up to the same standards required by Centers for Medicare & Medicaid.  All of this takes planning, time and money.  All are in short supply at this time.

NCD, the President and Congress must be told not all individuals can successfully live in the community.  Many have tried and failed OR the community has failed them. VOR has contacted NCD and the White House with its concerns and objections.  Now it is our turn.

The contact information for the NCD is: National Council for Disability, 1331 F Street NW, Suite 850, Washington, DC 20004; Telephone: 202-272-2022; Fax: 202-272-2004; E-mail: website – http://www.ncd.gov.  At ncd.gov website you can click on their e-mail contact on the lower left hand side.

The President & Congress are best contacted through e-mail, fax or telephone. The White House contacts are: www.whitehouse.gov or 202-456-1111.  The mailing address for the White House is 1600 Pennsylvania Avenue NW, Washington, DC 20500.  Our Congressional Delegation can be reached as follows:

Sen Patty Murray                                 202-224-2621/F-202-224-0238

Sen Maria Cantwell                              202-224-3441/F-202-228-0514

Rep Suzan DelBene -1st                      202-225-6311/F-202-226-1606

Rep Rick Larsen-2nd                           202-225-2605/F-202-225-4420

Rep Jaime Herrera Buetler-3rd         202-225-3536/F-202-225-3478

Rep Cathy McMorris Rodgers-4th    202-225-2006/F-202-225-3392

Rep Doc Hastings -5th                         202-225-5816/F-202-225-3251

Rep Derek Kilmer-6th                         202-225-3251

Rep Jim McDermott-7th                     202-225-3106/F-202-225-6197

Rep Dave Reichert-8th                       202-225-7761/F-202-225-4282

Rep Adam Smith-9th                           202-225-8901/F-202-225-5893

Rep Denny Heck-10th                         202-225-9740/F-202-225-0129

Website addresses are also a link for contact.  Senators (last name.senate.gov); Representatives (lastname.house.gov)

Please send them your thoughts about the need for facility care as part of the continuum of care – the Safety Net – for our most vulnerable.

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