Tuesday, June 27, 2017

Self Advocacy Network webinar July 12!

Please share! 

How do "Community Conversations" work? Find out...

Join us for the next HSRN webinar July 12!

Planning and Implementation of the Iowa Community Conversation on Disability and Aging Advocacy

Last year, Iowa disability and aging advocates teamed up to learn what was working, not working, and what was needed to help self-advocates get more involved in Iowa. The conversations were held at the same time in five communities across the state and on the Web for those who could not travel to join one of the groups. In this webinar, conversation organizers will describe their planning process, do a "walk-through" of the agenda they created to use at all locations, explain how participant input was gathered and shared, and present next steps and lessons learned.

Join us to learn how you might use this idea in your state! (See list of presenters below.)
Wednesday, July 12, 2017
12:00 pm  |  Central Daylight Time (Chicago, GMT-05:00)  |  1 hr

When it's time, click here to join the meeting by computer or other screen.
Or Join by phone
+1-855-282-6330 US TOLL FREE
Meeting number (access code): 925 160 182 #
Accommodations:  This webinar will be LIVE CAPTIONED for those who are deaf and/or hearing impaired. If you have a need for additional accommodations to participate in this webinar, please contact:  Laura Jackson at jacksonlw@umkc.edu or (816) 235-5626 no later than July 5th.
  • Greg Fier, Disability Rights Advocate, Clinton
  • Mike Hoenig, Program Coordinator, Center for Disabilities and Development, Iowa University Center for Excellence in Developmental Disabilities (UCEDD), Iowa City
  • Jeremy Beavers, Self-Advocate and President, People First of North Iowa, Mason City
  • Gary McDermott, Disability Rights Advocate, Vietnam Veteran, Clinton
  • Leah Donald, Director, Access 2 Independence (Center for Independent Living), Iowa City
  • Dawn Carstensen, Director, Lifelong Links, Milestones Area Agency on Aging, Davenport
  • Dawn Francis, Director, Iowa Statewide Independent Living Council (SILC), Des Moines
  • Don Dew, Director, Disabilities Resource Center of Siouxland (Center for Independent Living), Sioux City
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Sunday, June 25, 2017

Western Region Advisor's Meeting

Hello SA Group Advisors:

We have a request to have an advisor's meeting soon. There are a number of things to talk about. The topic we would like to address with our first meeting is to look at the regulations and practices with writing self advocacy into people's Res Hab, Community Hab plans, and ISPs, so as to support people who want to attendance SA groups and other related activities. We expect that several of you who have experience with this topic will be able to attend and share knowledge that we can put into a document to share throughout the region, and possible the state.

I think a meeting by phone would be easiest- knowing how busy you all are and how spread across the region we are. 

If you are interested in participating, can you respond to me with times you are available on July, 25th, 26th or 27th? Thank you! I hope you are all well as summer gets underway!

Sophia Roberts
Self Advocacy Association of NYS
Supervising Coordinator
SANYS Management Team
Cell: (716) 560-9307

"We must rapidly begin the shift from a 'thing-oriented' society to a 'person-oriented' society." - Dr. Martin Luther King, Jr.

Regional Self Advocacy Picnic

Come and join us for a Regional Self Advocacy Picnic on July 20th from 5-8pm. Meet and see other people who believe that people with developmental disabilities are people like everyone else! Connect with friends, and meet new people in a casual picnic atmosphere. See the attached flyer for details. We will provide everything for Hotdogs on the grill and water, please bring a dish to pass! You do not have to currently be a member of a self advocacy group to attend. Come and connect if you can! Feel free to share this flyer with people you think would be interested. Please RSVP if you are coming so we know how much ketchup we need :) Thank you. 

Fwd: Affordable care act

This is an excellent and easy to understand document about the Medicaid cuts. Thanks to Jessica Levesque for sharing this with me. It is a PDF attachment. 

Sophia Roberts
Self Advocacy Association of NYS
Supervising Coordinator
SANYS Management Team
Cell: (716) 560-9307

"The best and most beautiful things in the world cannot be seen or even touched - they must be felt with the heart." - Helen Keller

Begin forwarded message:

Friday, June 23, 2017

Fwd: [sacoordinators] Fwd: SENATE AHCA BILL RELEASED - AND IT'S BAD!!!

Please make a call today to protect all of our services funded by Medicaid. The numbers to call are below and there is a sample of what you can say. The number of calls they get are important.

Sophia Roberts
Self Advocacy Association of NYS
Supervising Coordinator
SANYS Management Team
Cell: (716) 560-9307

"We must rapidly begin the shift from a 'thing-oriented' society to a 'person-oriented' society." - Dr. Martin Luther King, Jr.



June 22, 2017
TO:  COPA Members

The ANCOR alert below gives the latest on the Senate version of the Healthcare  bill.  
Please read both the ANCOR alert and this NYTimesArticle for the most up to date information

NY Senators Schumer and Gillibrand already oppose both bills, but many of our NYS Representatives may vote affirmatively on any replacement for the ACA. We need to get to these New York members of the House before the Senate bill comes to a vote to explain to them that both versions of the healthcare replacement would be disastrous for people with developmental disabilities.
Please Make 7 Quick Calls Immediately!
Call the Representatives below (even if you are not a constituent) and tell them:
My name is _____________  I am the parent/relative/friend of a person with developmental disabilities.  I am calling to ask you to oppose any legislation that would cut or cap Medicaid.   Medicaid funds 90% of essential services for people with developmental disabilities.  Medicaid cuts or caps would seriously endanger this population.
                 1.     Representative Chris Collins   202-225-5265
                 2.     Representative John Faso   202-225-5614
                 3.     Representative Peter T. King   202-225-7896
                 4.     Representative Tom Reed   202-225-3161
                 5.     Representative Elise Stefanik   202-225-4611
                 6.     Representative Claudia Tenney   202-225-3665
                 7.     Representative Lee Zeldin   202-225-3826
Ask your friends and relatives to make these calls, too!
Thank you!

Please contact your COPA team for further information or questions.
Barbara, Wini & JR


Barbara Crosier
Vice President, Government Relations
Cerebral Palsy Associations of NYS
3 Cedar Street Extension, Suite 2
Cohoes, NY 12047


John R Drexelius, Jr.
Government Relations Counsel,
Law Office of John R. Drexelius, Jr.
PO Box 141
Buffalo, NY  14223

(716) 316- 7552
E-mail: jrdrexelius@gmail.com
Winifred Schiff
Associate Executive Director for Legislative Affairs
InterAgency Council of Developmental Disabilities Agencies, Inc.
150 West 30th Street   15th floor
New York, NY  10001
Office - 212-645-6360
Cell - 917-750-1497


COPA - Coalition of Provider Associations
3 Cedar Street Extension, Suite 2
Cohoes, NY 12047
(518) 436-0467
- - - - - - - - - - - - - - -- - - - - - - -
Please Note:  The information contained in this message is privileged and/or confidential and is intended only for the use of the individual or entity named above.  If the reader of this message is not the intended recipient, or an employee or agent responsible for delivering this message to the intended recipient, you are hereby notified that any dissemination, distribution or copying of this communication is strictly prohibited.  If you have received this communication in error, please notify us immediately by replying to the message and deleting it from your computer.  Thank you.
View the web and mobile version here. 
This is not a drill. Medicaid is in serious danger.
Earlier today, the Senate released its version of the American Health Care Act, now called the Better Care Reconciliation Act of 2017, 142 pages of proposed legislation that built off the House passed version from May. READ THE BILL HERE.
Our fears are now founded. Intelligence that ANCOR has gathered over the past week is now reality. A vote is expected to occur in one week – Thursday, June 29.
We have ONE WEEK to try to Save Our Services.
The Senate bill proposes extreme cuts to our programs:
  • Medicaid fundamentally changes into a per capita cap program beginning Fiscal Year 2020
  • The base year calculation in the Senate version changes use of the FY16 fiscal year to an average of 8 consecutive quarters between first quarter FY14 and third quarter FY17
    • ANCOR has made the point in the Senate that several states have decade old rates so while we appreciate the effort to address, this is not helpful
  • Importantly, the Senate version DECREASES the amount to disability programs by changing the growth rate from the House version of CPI-M + 1% for blind/disabled programs to CPI-M+1% until FY2025 and then it drops off to CPI-U from thereon out
    • To understand the impact of this, check out this Urban Institute piece. In a nutshell, the CPI-M is projected to grow at about 3.7% over the next decade, CPI-U is projected to grow at 2.4% over the next decade. The Senate is creating more federal "savings" with this change.
As Senator Casey (D-PA), who joined ANCOR members today to thank them for their service, reminded us today on the 18th Anniversary of Olmstead, calls to Senate offices matter and we must call and call again!
On the anniversary of the Olmstead decision, the Senate is proposing a bill that would decimate community services to people with disabilities. Without funding and supports, community integration as defined by the Americans with Disabilities Act and affirmed by the Olmstead Supreme Court decision is a broken promise.
Watch yesterday's U.S. Senate hearing where ANCOR Board Member Heidi Mansir speaks out (36:20 minutes in)
Read Senator Casey's blog addressing issues with the AHCA and the values of Olmstead:
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1101 King Street, Suite 380, Alexandria, VA 22314

Arnold Ackerley
Administrative Director
Self-Advocacy Association 
of New York State
500 Balltown Road
Schenectady, NY 12304

Phone:  518 382 1454
Fax:  518 382 1594

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Thursday, June 15, 2017

Fwd: 2017 SANYS Conference award nomination form

From: Daniel Flanigan <central@SANYS.ORG>
Subject: 2017 SANYS Conference award nomination form
Date: June 15, 2017 at 12:03:26 PM EDT

Hello everyone,

Attached is the nomination form for this year's conference awards.  Please note the addition of the Steve Holmes Lifetime Achievement award category.  There are so many people across this state who have worked tirelessly to promote self-advocates and self-advocacy for so many years.  How fitting to recognize their efforts with an award named for someone who has left such a huge impact on the state of SA in New York State.  Thanks for giving this your valuable consideration and please note the deadline of August 4.  Thanks so much for everything you do.


Daniel Flanigan
Central Region Coordinator
Self-Advocacy Association of NYS (SANYS)
1005 W. Fayette St., Suite 1A
Syracuse, NY, 13204
315-473-6927   Office
315-882-6781   Cell