Listed below are the workshops which will be presented during the 2019 Statewide Conference & Expo. 

Confirmed Workshops

THE RISK OF THE QALY:  DISABILITY RIGHTS AND PRESCRIPTION DRUG COVERAGE

Session Summary
Disability rights advocates have long objected to the Quality Adjusted Life Year (QALY), a measure for assessing the value of health care that discriminates against people with disabilities by valuing their lives as worth less than their non-disabled counterparts. Unfortunately, proposals are emerging in New York and across the country to introduce QALYs into the process of determining prescription drug coverage. This session will discuss these threats and how to counter them.

Presenters

  • Sara van Geertruyden, Partnership to Improve Patient Care
  • Rachel Patterson, Epilepsy Foundation
  • Bethany Lilly, Bethany Lilly, The Arc of the United States
  • Harry Weissman, Harry Weissman, Disability Policy Consortium

MEDICAID REDESIGN - A RETROSPECTIVE ASSESSMENT OF ITS IMPACT ON LTC

Session Summary
New York’s Medicaid Redesign was initiated in 2012 and has made significant changes to Long Term Care. This panel will discuss current issues and future solutions.

Presenters

  • Melvyn R. Tanzman
  • Marilyn Saviola
  • Valerie Bogart


STRATEGIES FOR EFFECTIVE COMMUNICATION WITH LEGISLATORS

Session Summary
Advocacy is used to promote an issue in order to influence policy-makers/Legislators and encourage social change. Are you interested in how the political system works, how you can be more effective in influencing Legislators and become a catalyst for Effecting Positive Systemic change?

Presenter

  • Clifton Perez


ADVOCATING FOR POLICIES PROTECTING PEOPLE FROM MEDICAL BILLING ABUSES

Session Summary
Too many medical bills are confusing and anxiety provoking. Participants will learn about legislative proposals to make medical billing simpler, fairer and protect people from billing abuses. Discussion includes strategies for using stories of medical billing nightmares to influence policy.

Presenter

  • Heidi Siegfried, Esq.


PEER INTEGRATION PROGRAM:  ACCES-VR & ILC'S WORKING TOGETHER

Session Summary
There is a growing body of evidence that supports the fact that PEER services improve physical and behavioral health outcomes. Evidence also exists in the field of rehabilitation demonstrating that peer involvement leads to enhanced community integration and employment. The workshop presenters will discuss the 3-year PIP pilot projects at ACCES District Offices in White Plains & Rochester and why the Independent Living Centers Peer Integration Programs are key to assisting participants to navigate their way through various obstacles and fully participate in the vocational rehabilitation process.

Presenters

  • Joe Bravo
  • Rebecka Palmer
  • Dustie Huff


GETTING YOUR STORY OUT ON TV, NEWSPAPERS, AND SOCIAL MEDIA

Session Summary
Use of the media is critical in the advocacy of issues facing people with disabilities. How do you craft stories that reporters want to cover, both for both urban and upstate audiences? How can you use social media and work with editorial boards or on letters to the editor?

Presenters

  • Jess Powers
  • Joe Rappaport
  • Todd Vaarwerk


WIOA, PRE-ETS, AND STUDENTS WITH DISABILITIES

Session Summary
This session will define and provide an understanding of Pre-Employment Transition Service (Pre-ETS) under WIOA. Attendees will learn about Pre-ETS and what they are intended to provide students with disabilities.

Presenters

  • Joseph Tedesco
  • Laura Hartmann


BCID'S COMMUNITY HEALTH WORKER PROGRAM:  A MODEL FOR THE DISABILITY COMMUNITY

Session Summary
Learn about a unique community health worker program which offers peer support to people with disabilities by people with disabilities. Outcomes show both program members and CHW’s benefit.

Presenters

  • Milenka Berengolc
  • Yesenia Torres


INTEGRATING HOMELESS PEOPLE WITH DISABILITIES INTO COMMUNITY LIVING

Session Summary
Barrier Free Living has 27 years of experience preparing ADL dependent people for community living. Using a model based on Courage Resentence in Golden Valley, MN, BFL placed 750 homeless people with disabilities into permanent housing with one of the lowest rates of return to shelter in New York City’s Homeless system.

Presenters

  • Paul Feuerstein
  • LeShan Gaulman


WORKFORCE INTERGRATION: PAST, PRESENT AND FUTURE

Session Summary
The presentation would be a look at disability in the workforce past, present and future with a focus on shifting paradigms and companies who are embracing neuro diversity and how technology is changing the landscape of employment for people with disabilities.

Presenters

  • Hillary Nichols

INCLUDING ALL PEOPLE IN HEALTH PROMOTION: LESSONS FROM THE DIABETES PREVENTION PROGRAM

Session Summary
Participants will learn about how one project in NYS is bringing the National Diabetes Prevention Program to people with disabilities in underserved areas of the state. Hear from the partners who are leading this effort and its success so far and learn how you can bring this inclusive lifestyle change program to your service area.

Presenters

  • Mari Brick
  • TBD

FROM INSTITUTIONS TO COMMUNITY: PROVIDING INDEPENDENT LIVING BEHAVIORIAL HEALTH SERVICES

Session Summary
Where have we been? Where are we now? How did we get here? In this session we will share lessons learned providing behavioral health services as independent living centers.

Presenters

  • Stephanie Orlando
  • Sarah Lanzo
  • Kevin Smith

PEER MENTORING: A PROVEN PROCESS FOR SUCCESSFULLY TANSITIONING INDIVIDUALS OUT OF INSTITUTIONS

Session Summary
This presentation will use the Center for Disability Rights’ Peer Mentor program to showcase the effectiveness of using a peer mentorship program in transitioning disabled individuals out of institutions into their own homes.

Presenters

  • Priya Penner
  • Andrea Austin 

LANGUAGE ACQUISITON AND COMMUNICATION ACCESS: THE PROBLEMS FACING YOUNG CHILDREN

Session Summary
Exploring a broad range of issues and practices that affect the language acquisition and learning potential of young children who are Deaf/Hard of Hearing.

Presenters

  • Heather Shaffer, Southern Tier Indpendence Center

TRANSITION TO MEDICAID MANAGED CARE FOR PEOPLE WITH INTELLECTUAL/DEVELOPMENTAL DISABILITIES

Session Summary
Session participants will get an overview of the State’s implementation of managed care for people served by OPWDD. Up-to-date information will be provided, and consumer advocacy goals will be reviewed.

Presenters

  • Lara Kassel
  • TDB

SYSTEMS ADVOCACY- CREATING SYSTEMIC CHANGE IN THE CURRENT ENVIRONMENT 

Session Summary
Systems advocacy is at the core of the Independent Living & disability rights movements. Yet with new guidelines at the state and federal level, many are thinking that we can no longer advocate or even mention the “A” word. This workshop will clarify the difference between systems advocacy and lobbying – and how centers can still do both!

Presenter

  • Kimberly Tissot, Able South Carolina

FUNDRAISING TO INCREASE ADVOCACY ACTIVITIES AT YOUR ILC 

Session Summary
ILCs are always looking for new ways to increase discretionary funding. This is even more important now given tighter restrictions on the use of state and federal funds for systems advocacy activities. Join us for a panel discussion with ILCs that have been successful in drawing down private funds through foundation funding, as well as annual and ongoing fundraising events. Come prepared for an interactive discussion where you can share your center’s successes and challenges!

Presenters

  • Karen Six, Resource Center for Independent Living
  • Denise Figueroa, Independent Living Center of the Hudson Valley
  • Maria Dibble & Todd Fedyshyn, Southern Tier Independence Center

EXECUTIVE DECISION-MAKING. HOW TO EDUCATE, INFORM AND GARNER THE SUPPORT OF THE HIGHLEST LEVELS OF STATE GOVERNMENT 

This workshop, designed for SSAN staff and other systems advocates, will discuss:

  • The State Budget Process: The Wheels of Government After Lawmakers Go Home
  • Do's and Don’ts of Executive Level Advocacy
  • Breaking Through: How One Organization Won the Support of the Executive Branch

Speakers: Ron Kirmani, Communications Strategist (facilitator); Karen Rae, former senior government official under Governor Cuomo; two additional former senior government officials under Governor Cuomo, TBD.


BEYOND POLICY: THE GRIT BEHIND CAMPAIGNS FOR SOCIAL CHANGE 

This workshop, designed for SSAN staff and other systems advocates, will discuss:

  • Barriers and Windows: Having an Impact in Today’s Political Climate 
  • Employment: Access and Opportunity for Everyone: The reality of building and maintaining a campaign for employment for people with disabilities in NYS
  • Be Fair to Direct Care: How the NY Alliance for Inclusion and Innovation Got the Attention of Decision-Makers in Albany, and Kept It

Speakers:  Ron Kirmani, Communications Strategist (facilitator); John Robinson, CEO, Our Ability; TBD, NY Alliance for Inclusion and Innovation


DISABILITY, DIVERSITY AND INTERSERSECTIONALITY AT CILS: WHY WORDS MATTER AND ADDRESSING MICRO-AGGRESSIONS-- PART I 

Session Summary

CILs are always striving to reach unserved and underserved populations and to represent better the vibrant, racial, ethnic, linguistic, and multi-cultural communities that we serve.  As Centers for Independent Living, we all believe in “Nothing About Us, Without Us!”  We should abide by the same rules when it comes to including, serving, and being led by all the diverse people with disabilities in our communities.  Historically, evidence of embracing diversity disability and intersectionality is nonexistent in many of the centers. The culture of Centers must change to maintain relevance in the distant future. We must engage in thoughtful conversations, strategic partnerships, proactive outreach, and organizational shifts to ensure that our organizations are reaching, serving, and welcoming to people with disabilities of all backgrounds in our communities.  Strategies to intentionally serve people with disabilities of diverse nature is not only relevant to our consumers, but to ensure that our staff, decision-making staff, board members, volunteers, and community leaders represent those same backgrounds and life experiences. Join this two-part interactive conversation to help determine where your Center is when it comes to serving diverse populations, and where it needs to go.

Presenter

  • Stanley Holbrook, Independent Living Research Utilization (ILRU)

DISABILITY, DIVERSITY AND INTERSERSECTIONALITY AT CILS: WHY WORDS MATTER AND ADDRESSING MICRO-AGGRESSIONS-- PART II

Session Summary

CILs are always striving to reach unserved and underserved populations and to represent better the vibrant, racial, ethnic, linguistic, and multi-cultural communities that we serve.  As Centers for Independent Living, we all believe in “Nothing About Us, Without Us!”  We should abide by the same rules when it comes to including, serving, and being led by all the diverse people with disabilities in our communities.  Historically, evidence of embracing diversity disability and intersectionality is nonexistent in many of the centers. The culture of Centers must change to maintain relevance in the distant future. We must engage in thoughtful conversations, strategic partnerships, proactive outreach, and organizational shifts to ensure that our organizations are reaching, serving, and welcoming to people with disabilities of all backgrounds in our communities.  Strategies to intentionally serve people with disabilities of diverse nature is not only relevant to our consumers, but to ensure that our staff, decision-making staff, board members, volunteers, and community leaders represent those same backgrounds and life experiences. Join this two-part interactive conversation to help determine where your Center is when it comes to serving diverse populations, and where it needs to go.

Presenter

  • Stanley Holbrook, Independent Living Research Utilization (ILRU)

SOCIAL MEDIA AND MODERN-DAY ADVOCACY: STEPS TO TAKE TODAY, AND WHAT TO PLAN FOR 

Session Summary

This workshop, designed for SSAN staff and other systems advocates, will discuss:

  • Social Media’s Impact on Today’s Advocacy
  • Five Essential Steps to a Successful Social Media Campaign
  • The Easy Lift: What Every Organization Should Be Doing Today
  • Carving Out Time for Consistent Engagement

Speaker  

Joshua Poupore, Chief Political Communications Strategist, Corning Place Communications

 

SERVICES FOR THOSE WHO SERVED: ASSISTING VETERANS AND THEIR FAMILIES IN YOUR DAILY WORK 

Session Summary

Are you a veteran or the loved one of a veteran? Do you work with veterans and/or their loved ones?
Come learn about the New York State Division of Veterans Affairs and the benefits you or your loved one earned.

Presenter  

  • Benjamin Pomerance, NYS Division of Veteran’s Affairs

HOUSING RIGHTS FOR PERSONS WITH DISABILITIES UNDER THE NEW YORK STATE HUMAN RIGHTS LAW 

Session Summary

The New York State Division of Human Rights’ Disability Rights Director, John Herrion, will present on housing rights for persons with disabilities under the New York State Human Rights Law.  Topics will include: covered housing providers; prohibited discrimination; rights to reasonable accommodation; parking; emotional support and service animals; and source of income discrimination.  This program will also cover how to file a complaint with the Division and what to expect once it’s been filed

Presenter  

  • John Herrion, The New York State Division of Human Rights

USING POOLED TRUSTS TO KEEP MEDICAID OR SSI 

Session Summary

Learn what pooled trusts are, and how they can be used if your income is above the Medicaid limit or if you receive a lump sum, such as a lawsuit settlement or retroactive Social Security check. Learn how pooled trusts are different than ABLE accounts and when to use each. Learn how a pooled trust affects other benefits like SNAP and Section 8.

Presenter  

  • Valerie Bogart, Evelyn Frank Legal Resources Program