Wednesday, March 21, 2018

Please share with your Self Advocacy Groups

Registration is now open for the Western Regional Self Advocacy Conference in Batavia!

Register on line by CLICKING HERE or download and print the paper copy of the registration form and send it in to us:

We have a great conference this year! We are excited about all of the workshops- from learning to live healthier with bodybuilder Kaylin Corbran, to playing games to learn about Rights with the Incredible Angels SA group, to getting the latest from OPWDD about the move from MSC to Care Coordination. We have something for everyone, including those who like to cook with Carl :)

Our Keynote speakers are:
  • Western New York's own Engelic Everett, author of the children's book "Olivia the Bully", motivational speaker, and self advocate
  • Sheriff Randy Bower of Orleans County. Sheriff Bower, who is also paraplegic, will speak about the power of self advocacy, determination, and what the Sheriff's office does.
  • Chester Finn, International Speaker and all time self advocacy rabble rouser
We also have one board position open this year. We will be holding elections for the Buffalo area representative. If you live in Orleans, Genesee, Erie, Chautauqua, Cattaraugus, Niagara, or Allegany county, and would like to run to represent the region on the SANYS Board of Directors, please contact Sophia Roberts at 716-560-9307 or Board members serve for 3 years, travel to Albany 4 times a year, and are active in the region, working closely with the Regional coordinator. This is a great opportunity to take your advocacy to the next level.

There is a water park at the hotel. Palm Island Water Park is open on Friday from 10am -8pm. Admission is free for people who stay overnight at the hotel, and only $5 for people attending the conference for one day only. This is a big discount for attendees of the conference. For those who like to swim and slide, you can plan to stay after the conference on Friday and have some fun!

Looking forward to seeing you there!

Maggie Maclean and Jimmy Sandle, 2018 Conference Co-Chairs

Fwd: Call Your Assembly Democratic Member for #bFair2DirectCare

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:

From: DDAWNY <>
Subject: Call Your Assembly Democratic Member for #bFair2DirectCare
Date: March 21, 2018 at 2:47:04 PM EDT


As we head into the final lap of state budget negotiations, we've initiated a push for the Legislature to include language that expresses its intent to include the additional installments of living wage funding for direct support professionals (DSPs) for the next four state fiscal years.

As you may know, both the Assembly's and Senate's one-house budget proposal included funding for the second installment of a six-year plan to bring DSPs to a living wage.  The funding was also included in the Executive Budget. But due to the state's fiscal constraints, neither house has been able to include the #bFair2DirectCare advocacy community's request for an acceleration of that program.

Nonetheless, including this "intent" language would be a big help. This language, which the Senate has advanced, pledged 3.25 percent increases to be funded every April 1 from 2019 through 2022. This is essentially the rest of the living wage program begun with the 2017-18 budget and continued into the coming fiscal year.

Now the task is to convince the Assembly to agree to adopt that language and then advocate for it in final budget negotiations with Governor Cuomo.

This is where you can be a tremendous help. Assembly Mental Health Chair Aileen Gunther - a longtime champion for people with developmental disabilities - has prepared a letter (attached) asking Speaker Carl Heastie to advocate for the "intent" language. She's circulating this letter among her colleagues in the Assembly Democratic majority and asking them to sign on.

The more Assembly Democrat signatures he sees on that letter, the more likely the Speaker will be to agree to the request.

Please contact your Assembly Democratic member and urge him or her to sign on to Assemblywoman Gunther's #bFair2DirectCare letter (attached) the Speaker.

  •  Or call the Assembly switchboard at 518.455.4100
This local advocacy will add to the advocacy we are doing at the Capitol and make the message even more powerful. As we have seen throughout our campaign these last two years, legislators are very responsive to constituent communications.

It's CRITICAL that these calls happen this week, as final decisions on the state budget are being formulated right now.

Following are additional talking points for your conversations with legislators.


       I'm calling from XXXXX, which is part of the #bFair2DirectCare campaign
  • First, I want to thank you for everything you've done to secure a living wage for direct support professionals and the people they support.
  • We're grateful you followed through on last year's promise to include the 2nd phase of living wage funding in the 2018-19 state budget. Your support helps make it happen.
  • This year we asked for a spin-up of that funding but we know it's a tough year with many difficult choices and it  couldn't get done.  We're disappointed but we get it.·         
  • There is something you can do though that costs no money.
  • We're asking the Assembly to include language that expresses its intent to include the additional installments of living wage funding for DSPs for the next four state fiscal years. There are no dollars attached and it does not financially encumber the state in any way.
  • -
  •  But it goes a long way toward telling the DD community that the Legislature is with them.
  • Assembly Mental Health Committee Chair Aileen Gunther is circulating a letter to Speaker Heastie with this request. We're asking you to sign it.
  • -
  • We cannot express enough how much we appreciate your support for our cause. Please take this next step.
  • -
  •  Will you sign on to Assemblywoman Gunther's letter?
Please contact your COPA team for further information or questions.
Wini, JR & Barbara

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

Winifred Schiff
Associate Executive Director for Legislative Affairs
InterAgency Council of Developmental Disabilities Agencies, Inc.
Cell - 917-750-1497

John R Drexelius, Jr.
Government Relations Counsel,
Law Office of John R. Drexelius, Jr.
PO Box 141
Buffalo, NY  14223
(716) 316- 7552
Fax: 716-875-7552


The Developmental Disabilities Alliance of Western New York (DDAWNY) is a collaborative group of member voluntary agencies that provide services to people with developmental disabilities.  
While honoring individual agency missions, it is the intent of the Alliance to assist agencies to develop relationships, promote unified strategies and share risks for the mutual gain with and for the benefit of people with developmental disabilities.
DDAWNY, 1219 North Forest Road, Williamsville, NY, Williamsville, NY 14221
Sent by in collaboration with
Constant Contact

Tuesday, March 20, 2018

Fwd: Celebrate WDSD with Free Admission at the Museum of Disability History

Celebrate WDSD tomorrow - 03-21

Join us as we celebrate World Down Syndrome Day at the
Museum of disABILITY History with FREE admission tomorrow, Wednesday, March 21, 2018. We will be celebrating from 9 to 11am, but admission is free all day (museum closes at 4pm)

View the "In Celebration of Down Syndrome" exhibit, which explores medical history, myths and facts, as well as success stories and popular culture 
Plus, in recognition of National Developmental Disabilities Awareness Month, a 10% discount will be offered in the Museum store throughout the month of March

Then take a drive by the Peace Bridge tomorrow night
to see it lit up in blue and yellow!
ALSO...Remember to Rock your Socks - Wear bright colored, mismatched socks to spread awarenes about Down syndrome. #LotsOfSocks!
Copyright © 2018 Down Syndrome Parents Group of WNY, All rights reserved.
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Down Syndrome Parents Group of WNY
547 Englewood Drive
Buffalo, NY 14217

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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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Albany, Ny  12203

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