Friday, March 16, 2018

Change from MSC to Care Coordinator- Public Forum- Please Share

Hello everyone- Please share this information with your self advocacy group(s) as well as other people who get services in your agency:

OPWDD is hosting Public Forums across the state to share information about the upcoming change from MSC to Care Coordination. The forum for our area is:

April 11th – 1 p.m. to 2:30 p.m. and 6 p.m. to 7:30 p.m.

Genesee Orleans ARC

38 Woodrow Road

Batavia, NY


If you are not able to attend this forum, but would like to learn more about this change, you can see the recorded video of presentations about it on our Facebook page: @sainaction . A presentation from the new Care Coordination organizations is in our videos on that page, and a presentation from Kirk Maurer of OPWDD is in the newsfeed on the page. In April we will have an agency director, Mindy Cervoni at our regional meeting to talk about the changes from her perspective. The meetings are held the 3rd Thursday of every month from 6-7:30pm at 1195 Main Street, Buffalo, NY. We will also do our best to Live stream them on Facebook as well. 

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

Tuesday, March 6, 2018

Please share with your groups

As part of the WNY Partnership Coalition I am forwarding this letter and attached application so you can consider submitting it for the 2017 award (given at the 2018 Developmental Disabilities Awareness conference in May)

Hello self-advocacy groups and advisors. 

We are sending you this letter to explain the attached application. The Western NY Partnership Coalition focuses on what service providers do well for and with people who have disabilities (Best Practices). We are asking that you look at the application and if you have some input, write it down and submit the application to us for consideration. Also, send it to someone in the agency, so that the agency can apply. If your agency does some good and innovative things we would like them to apply to win the award. We believe that people with disabilities should be part of the application process and give their input. This is totally voluntary and up to you if you think the agency that you are affiliated with deserves to be recognized for their best practices.

Monday, March 5, 2018

Fwd: Call Your Legislators TODAY & tell them to #bFair2DirectCare!

View this email in your browser

Contact your NYS Legislators & ask for the #bFair2DirectCare Living Wage Spin Up

Today, Tuesday & Wednesday (March 5th, 6th & 7th) the Legislative Conferences (Senate Republican, Democratic and Independent Democratic Conferences and Assembly Democratic and Republican Conferences) are meeting to determine their respective Budget priorities to be passed the week of March 12th, which sets their negotiating positions as they meet with the Governor to enact a Budget for the next fiscal year. 

It is essential you CALL your Senate & Assembly Members and SAY: 
  • Please stand up for DSPs and people with developmental disabilities by urging your Conference to include the spin up of #bFair2DirectCare Living Wage funding in your one-house budget resolution.
  • It's an additional $18.25M beginning Jan. 1, 2019, or just 0.01 percent of the total budget.
Click here find your NYS Senate and Assembly Members.
Copyright © 2018 bFair2DirectCare, All rights reserved. 
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Wednesday, February 14, 2018

Fwd: YOUTH POWER!'s AMPLIFY-NY 2018 Western Region Youth Leadership Forum and Foundations for Leadership!

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.

Deadline to apply for this great leadership opportunity for youth ages 14 - 24 is March 11th.   

☺ Susan  

From: Azaria Wittekind []
Sent: Wednesday, February 14, 2018 10:59 AM
Subject: Fwd: YOUTH POWER!'s AMPLIFY-NY 2018 Western Region Youth Leadership Forum and Foundations for Leadership!


Opportunity for young people ages 14-24!!!


Please do not miss out on this amazing new opportunity for young leaders coming to the Western Region!!!


Please share with your contacts and young people interested in becoming advocates!



-Azaria Wittekind


Youth Peer Services Training and Credentialing Coordinator


320 North Goodman St. Rochester, NY 14607

Cell Phone:585-314-2452



Our strength is in numbers and our constant quest for knowledge.

Help grow our network today! 


Follow us on Twitter, Instagram and Pinterest @YOUTHPOWERNY
Follow our Instagram Spreading Hope Campaign @YPSpreadsHope


---------- Forwarded message ----------
From: Elijah Fagan-Solis <>
Date: Tue, Feb 13, 2018 at 5:29 PM
Subject: YOUTH POWER!'s AMPLIFY-NY 2018 Western Region Youth Leadership Forum and Foundations for Leadership!

Good Afternoon!  Please share the following announcement with appropriate with youth, parents, and caregivers.

YOUTH POWER! is excited to announce two great opportunities available for youth ages 14-24 and parent/caregivers in the Western Region!  We are now accepting applications for the 2018 Western Region Youth Leadership Forum (YLF) and accompanying Foundations for Leadership parent/caregiver workshop series!  Applications have been attached; read below for more information!   **Please note: it is not required that youth and their parent/caregivers both attend the YLF to participate in this opportunity!** 

2018 Western YLF: April 4-7, 2018 | Adam's Mark Hotel and Event Center | Buffalo, New York
YOUTH POWER!'s AMPLIFY-NY Initiative is hosting our 2018 Western Region Youth Leadership Forum (YLF) for young people with disabilities to speak up, build skills, and prepare to take on leadership roles. This peer-run forum brings opportunities to YOUth and gives the next generation of leaders the tools and support they need for success. 


The YLF is a safe, youth-friendly environment with plenty of fun activities to complement the wealth of knowledge being learned!  This 4-day, 3-night forum is FREE to attend and includes panel presentations, hands-on activities to practice leadership skills, and supported leadership activities. Future leaders do not want to miss this opportunity to build leadership skills and become empowered with self-confidence and self-determination! 

·  It's a unique opportunity; have the chance to attend as one of 30 young people.

·  Be connected with an experienced advisor to complete a leadership project that interests you.

·  This event is FREE if accepted and includes your meals, housing, and transportation assistance.

·  In order to be selected you must:

o Have a developmental or other disability.

o Be in the age range of 14-24 (Youth under 18 must have guardian approval).

o Live in New York State.

o Show demonstrated leadership potential in your application.

o Complete the application and return it by March 11, 2018


Apply now online by clicking here or download the paper application attached to this email.

*Online applications require that you upload letter(s) of recommendation(s) and the Application Signature Page (attached) 


Foundations for Leadership: April 4 AND 7, 2018 | Adam's Mark Hotel and Event Center | Buffalo, New York

Connected to the YLF is Foundations for Leadership, a workshop series for parent/caregivers of youth with developmental and other disabilities to further develop their skills to support their youth developing into self-advocates and securing leadership roles.  Parents/caregivers attend training on the first and last days of the YLF, providing them the opportunity to support their youth attending a new event, and witnessing them graduating the forum with pride (if they are participating).  The parent/caregiver workshop series includes both individual sessions and joint sessions with youth participants. YOUTH POWER! has partnered with Families Together in New York State, Parent to Parent of New York State, and INCLUDEnyc to develop this opportunity.


Apply now by downloading the paper application attached to this email 





Elijah Fagan-Solis
Statewide Emerging Leadership Manager



This communication may contain privileged and/or confidential information. It is intended solely for the use of the addressee. If you are not the intended recipient, you are strictly prohibited from disclosing, copying, distributing or using any of this information. If you received this communication in error, please contact the sender immediately and destroy the material in its entirety, whether electronic or hard copy. Any view expressed by the sender of this message or any attachment may be personal and may not represent the view held by Starbridge.  ­­  

Susan O'Hearn
Self-Advocacy Association of NYS, Inc. (SANYS)
Finger Lakes Regional Coordinator
585.461.8741 - Office
585.738.4687 - Cell

Tuesday, February 13, 2018

Fwd: More Information Regarding H.R. 620, ADA Education and Reform Act of 2017

Hello everyone! I just called Higgins office in Buffalo to advocate that he vote NO on this bill when it comes up for a vote tomorrow. and the person who took my call said I was the only one to call so far? If you are registered to vote and Higgins is your US Congressperson his number at Larkin at Exchange is 716 852 3501. Please call now, calls better than e-mails. If you are not sure who your Congress person is go to this link:
If you are not registered to vote please go here:
Please register now as important mid-term elections are this fall.
From: AHEAD [] 
Sent: Monday, February 12, 2018 4:05 PM
To: Mann Dolce, Susan <>
Subject: More Information Regarding H.R. 620, ADA Education and Reform Act of 2017


More Information Regarding H.R. 620, 
ADA Education and Reform Act of 2017

Read below. If you agree that H.R. 620 is a step back towards the time when disabled individuals were segregated Call your Representative and tell them vote no. Call your Senator and let them know that you are opposed to any similar bill in the Senate. 
 H.R. 620,  "ADA Education and Reform Act of 2017" has 108 cosponsors (97R, 11D) and is likely to come up for a vote this week. 
While the bill requires the Department of Justice to educate businesses on their failure to comply with a quarter century old ADA Standards of Accessible Design, updated with much fanfare in 2010, its key provision significantly restricts the ability of individuals to enforce their civil rights in court. 
H.R. 620 prohibits civil actions based on the failure to remove an architectural barrier to access into an existing public accommodation unless the aggrieved individual with a disabilty provides written notice that includes:
  1. the address of the property,
  2. the specific ADA sections alleged to have been violated,
  3. whether a request for assistance in removing an architectural barrier was made, and 
  4. whether the barrier was permanent or temporary. 
H.R. 620 would turn people with disabilities into second-class citizens, and its priorities are profoundly skewed. This bill goes against the very principles of an inclusive society that America is all about.  It is exceptionally harmful because: 
  1. The bill's proponents have forgotten the everyday experiences of millions of people with disabilities who cannot shop, transact personal business, or enjoy recreation as most Americans take for granted because so many public accommodations across the country have ignored the reasonable requirements of the ADA. Many new parents learn this when they find that stroller access is often impossible. For people with disabilities, it's the difference between participation and exclusion, and happens to many on a daily basis. For example, why should a wheelchair user be unable to join her family at a restaurant, just because the owner has resisted installing a ramp for over 25 years?
  2. The ADA is already very carefully crafted to take the needs of business owners into account. Compliance is simply not burdensome. But this bill would remove any reason for businesses to comply. Instead, they can take a "wait and see" attitude, and do nothing until they happen to be sued or sent a notice letter.
  3. H.R. 620 would require a person with a disability who encounters an access barrier to send an exactly written notice, and gives the business owner 60 days to even acknowledge that there is a problem-and then another 120 days to begin to fix it. No other group is forced to wait 180 days to enforce their civil rights. Even then, the business would face no consequence for violating the law for months, years, or decades, if it takes advantage of the months-long period to remedy the violation before a lawsuit is permitted.
  4. Establishing and running a business necessitates compliance with many laws and rules-this is the cost of doing business. It is unthinkable that we would eliminate consequences for small businesses that failed to pay taxes, or meet health and safety codes, unless they received an exact notice from the public, with extensive timelines to comply. Violating the rights of people with disabilities-and denying us access to places of public accommodation that others take for granted-should be treated no differently.
  5. H.R. 620 calls for education by the Department of Justice. But there are already extensive federal efforts to educate business owners about their ADA obligations, including the in-depth DOJ ADA website (, the DOJ ADA hotline, extensive DOJ technical assistance materials, etc. and by the 10 federally-funded regional ADA Centers ( that provide in-depth resources and training in every state. Yet a great many of the millions of public accommodations in the U.S. have made no effort to comply with the ADA. Twenty-six years since the ADA was enacted, businesses should be expected to comply with their legal obligations. Those that violate the law should be held accountable.
  6. Proponents of this bill have raised concerns about money damage awards. But that has nothing to do with the ADA, because the ADA does not allow money damages (*1 - see footnote). Such damages are only available under a handful of state laws. This bill will do nothing to prevent damage awards under state laws.
  7. The ADA accessibility standards are extremely important. They are not minor details or picky rules, but rather, are essential to ensure true accessibility. For example, a doorway that is too narrow can be the difference between accessing a business or not. A too-short bathroom grab bar can be the difference between using a restroom or being forced to go without a restroom.
  8. Supporters of this bill have cited concerns about frivolous lawsuits or serial litigants. However, courts and state bar associations already have extensive power to deal with any frivolous litigants or their attorneys. We should use those existing legal mechanisms, if needed, rather than denying the civil rights established by the ADA.
  9. It is troubling that this bill blames people with disabilities for public accommodations' failure to comply with the ADA. Why should disabled people pay the price of an inaccessible environment, where we cannot live our lives like everyone else? 
Please do not place additional barriers in the path of people with disabilities! We urge you to reject this bill.
1 Money damages are not allowed for private plaintiffs under Title III of the ADA, which applies to privately operated public accommodations, commercial facilities, and private entities offering certain examinations and courses. See 42 U.S.C. § 12188; 42 U.S.C §§ 12182 and 12181(7); 42 U.S.C. §§ 12183 and 12181(2); and 42 U.S.C. § 12189.
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AHEAD, 107 Commerce Ctr. Dr., Suite 204, Huntersville, NC 28078

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Prime Care and Person Centered Services to speak at this week's Regional SA Meeting- Please share

Hello everyone-

Representatives from the two new CCO's (Coordinated Care Organizations) will be at the Regional Self Advocacy meeting this Thursday from 6-7:30pm at 1195 Main Street to speak about the upcoming changes from MSC (Medicaid Service Coordination) to Care Coordinators. 

All are welcome to attend. Please share this invitation.

We will be live streaming the meeting on Facebook for those who can access it with technology but don't have the transportation to attend in person. 

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