Statewide Conference & Expo
September 27–29, 2021
Virtual 

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

Conference 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, The Arc of the United States
• 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, Westchester Disabled on the Move, Inc. 
• Marilyn Saviola, Independence Care System
• Valerie Bogart, Evelyn Frank Legal Resources Program

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, Independent Living Center of the Hudson Valley

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., Center for Independence of the Disabled, NY

PEER INTEGRATION PROGRAM (PIP):  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, Westchester Independent Living Center
• Rebecka Palmer, Westchester Independent Living Center
• Dustie Huff, Regional Center For Independent Living

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, Center for Independence of the Disabled, NY
• Joe Rappaport, Brooklyn Center for Independence of the Disabled
• Todd Vaarwerk, Western New York Independent Living, Inc.

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, ACCES-VR
• Laura Hartmann, ACCES-VR

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, Brooklyn Center for Independence of the Disabled
• Yesenia Torres, Brooklyn Center for Independence of the Disabled

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, Barrier Free Living
• LeShan Gaulman, Barrier Free Living

WORKFORCE INTEGRATION: 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, Resource Center for Accessible Living, Inc.
  
  

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, National Association of Chronic Disease Directors
• Aimee Parks, Westchester Independent Living Center
  
  

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, Western New York Independent Living, Inc.
• Sarah Lanzo, Independent Living of Niagara County
• Kevin Smith, Mental Health Peer Connection
  
  

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, Center for Disability Rights
• Andrea Austin, Center for Disability Rights
  
  

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, Medicaid Matters New York
• MaryBeth Schneider, The New York Alliance for Inclusion and Innovation
  
  

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 Kermani, 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 Kermani, 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 INTERSECTIONALITY 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

NEW YORK'S LONG-TERM CARE PLANNING PROJECT 

Session Summary

In 2018, Governor Cuomo announced the establishment of the Long-Term Care Planning Project (LTCPP), a joint effort by the New York State Department of Health (DOH) and the New York State Office for the Aging (NYSOFA). This project is designed to understand the projected and desired needs of older adults in New York by examining New York's long-term care system. The LTCPP will analyze, evaluate, and identify existing service gaps in New York's long-term care system, determine the most cost-effective evidence-based interventions, and prepare a strategic plan to meet the emerging needs of New York's aging population over the next decade.

Presenter  

• Greg Olsen, New York State Office for the Aging
• Mark Kissinger, Department of Health

What’s Happening With #FairPay4HomeCare and How ILCs and Consumers Can be Part of Organizing to Win

ILC leaders who have been actively involved in the Fair Pay for Home Care campaign with NY Caring Majority will share background on the bill (which would raise home care worker and personal assistant pay to 150% of minimum wage across NY), and what the strategy is to win Fair Pay in next year’s budget. They will also share strategies on engaging community members in this campaign.

Presented by:

• Ilana Berger, Hand in Hand
• Doug Hovey, Independent Living, Inc.
• Maria Samuels, Westchester Disabled on the Move, Inc. (WDOM)

Empowering Students With Disabilities                                                       

An in-depth conversation regarding the impact of having an ILC office within the schools, and being accessible to school staff, students with disabilities and their families.

Presented by:

• Judy Wroda, Southwestern Independent Living Center (SILC)

New SNAP Network Helps Providers Connect Seniors with Food Assistance  

The purpose of this workshop is to build awareness and engage senior providers around the release of New York States SNAP Elderly Simplified Application Project (ESAP) which will streamline applications and enrollment for Seniors in NY; highlight a new opportunity through Hunger Solution New York’s new SNAP and Seniors Professional Network; and gather feedback from providers regarding their current outreach efforts and SNAP questions.

Presented by:

• Kayla Snyder, Hunger Solutions NY
• Sherry Tomasky, Hunger Solutions NY

Updates on NYS DOH Traumatic Brain Injury (TBI) & Nursing Home Transition and Diversion Medicaid Waiver Programs                

The Nursing Home Transition and Diversion (NHTD) Waiver and Traumatic Brain Injury (TBI) Waivers provide home and community- based services to seniors and/or individuals with disabilities who choose to live in the community. These waivers can be used to prevent institutional placement (diversion) or provide the services needed for an individual to leave a nursing home (transition). This workshop will offer an overview of the eligibility requirements, waiver services offered and referral process. It will also discuss proposed changes in the waivers as they move forward for renewal in 2022 and 2023.

Presented by:

• Maribeth Gnozzio, NYS Department of Health (DOH)
• Thomas Rees, NYS Department of Health (DOH)

ILC Delivery of Pre-Employment Transition Services for Students with Disabilities 

Pre-Employment Transition Services (Pre-ETS) is a set of five services required by the Workforce Innovation an Opportunity Act for students with disabilities who are eligible or considered ‘potentially eligible’ for ACCES VR services. The services included are: job exploration counseling, work based learning experiences, counseling on opportunities for enrollment in comprehensive transition or post-secondary educational programs, workplace readiness training to develop social skills and independent living & instruction in self-advocacy. NY is currently providing these services through the Core Rehabilitation Services contracts and direct contracts with providers, including two ILCs, BRiDGES and the Capital District Center for Independence. Additional opportunities may be available in the future. This workshop will provide an overview of the services and the ILC role in delivering them.

Presented by:

• Joseph Tedesco, Adult Career and Continuing Education Services- Vocational Rehabilitation
• Laurel Kelley, Capital District Center for Independence
• Carlos Martinez, BRiDGES       

Pushing Past Our Biases

How do implicit or unconscious biases impact our deep seeded prejudices? How do we push past these biases when we do not even know that we have them? This presentation will answer these questions and explore, Implicit Bias, Microaggressions, Intersectionality, the nature of prejudice, diversity efforts – how these efforts have overlooked people with disabilities in the workplace and where do we go from here? How can we push past our biases to build a workplace, and a world where all people are valued and accepted?

Presented by:

• Renae Kimble, Western New York Independent Living (WNYIL)

NYS Medicaid changes coming in 2021-2022

In the 2020 NYS budget, major changes were enacted that may limit access to Medicaid home care services. Implementation is expected later in 2021 or in 2022. This session will discuss some of these pending changes, including the new minimum ADL threshold, the “independent assessor” procedure for personal care and CDPAP, and the “lookback” for new applicants seeking Medicaid home care or assisted living.

Presented by:

• Valerie Bogart, Evelyn Frank Legal Resources Program

What is Marketing and Branding, and How Can I Use Both?

In this workshop, you'll learn what marketing communications is for a Center, why a marketing strategy is needed, and how to make your brand work for you across all marketing efforts.

Presented by:

• Michelle West, Aprosae Marketing

Youth Leadership in Independent Living – Bridging the Gap

This presentation will discuss strategies to increase youth leadership and disability advocacy opportunities at ILCs. Additionally, participants will learn how YLAN can support them in building the next generation of disability leaders.

Presented by:

• Brianna Gower, Young Leaders and Advocates Network (YLAN)
• Elijah Fagan-Solis, Young Leaders and Advocates Network (YLAN)

ILCs emergency response to COVID-19 

In response to the COVID-19 pandemic, ILCs had to swiftly shift their services to meet the urgent needs in their community. This panel discussion will highlight New York’s Independent Living Center network response to COVID-19 through emotional wellbeing calls, food delivery services, vaccine clinics and more. We’ll also discuss advocacy efforts to provide emergency transition services to get people out of nursing facilities.

Presented by:

• Lindsay Miller, New York Association on Independent Living
• John Colon, Center for Independence of the Disabled, NY
• Bruce Darling, Center for Disability Rights

Right 2 Ride: A Transportation Curriculum for people with IDD

The Right to Ride video-based, plain language training curriculum covers: the ADA, Transit Advocacy, and Taking Transit. Developed by self-advocates for self-advocates.

 Presented by:

• Sophia Roberts, Self-Advocacy Association of New York State (SANYS)
• Mike Rogers, Self-Advocacy Association of New York State (SANYS)

How ILCs can Utilize Lessons Learned from the Pandemic in Improving Service Delivery

The COVID-19 pandemic has changed how Independent Living Centers are supporting consumers and meeting the needs of their communities. This includes changing how services are delivered to consumers by utilizing virtual service delivery options. In this workshop we’ll hear about best practices from ILCs across the country who have successfully incorporated elements of remote, virtual delivery of core services utilized during the pandemic into CIL service delivery post-pandemic. We’ll also have a facilitated discussion regarding what centers have been doing in NY, and the path forward.

Presented by:

• Paula McElwee, Independent Living Research Utilization
• Brooke Curtis, Independent Living Research Utilization
• Jeremy Morris, Ohio Statewide Independent Living Council
• Sarah Martinez, Access 2 Independence, Iowa City, IA

Engaging Disabled BIPOC Communities In Advocacy Against Assisted Suicide Laws  

Policy makers and news media often view doctor assisted suicide laws as a progressive cause. Led by Not Dead Yet’s Director of Minority Outreach, this workshop will focus on reasons that multiply marginalized disabled people tend to oppose these laws and a model program to build an organized BIPOC (Black, Indigenous, People of Color) disability opposition in Massachusetts.

 Presented by:

• Anita Cameron, Not Dead Yet
• John Kelly, Second Thoughts Massachusetts

NYS Homes and Community Renewal Housing Choice Voucher Program

An overview of the Housing Choice Voucher Program and various sub-programs such as: project-based vouchers, mainstream vouchers, VASH, the Section 8 Homeownership Program, and the Family Self-Sufficiency Program (FSS) aimed at assisting low-income families, many of whom are disabled or older New Yorkers.

Presented by:

• Jill Harbeck, NYS Homes and Community Renewal (HCR)
• Justine Lechner, NYS Homes and Community Renewal (HCR)

Will the Next Pandemic Lead to More Nursing Home Resident Death and Despair? 

COVID-19 exposed the long-standing problems that have existed in nursing homes for decades and brought to light new ones, including their lack of preparedness for such a pandemic. A state law passed last year after the height of the devastation from COVID-19 required New York nursing homes to develop Pandemic Emergency Plans (PEP) in order to avoid a repeat of the problems that led to residents’ misery and death. This panel will discuss a recent study done of those PEPs and their inadequacy, as well as recommendations for federal changes to address six critical areas in need of reform within the long-term care system.

Presented by:

• Daniel Ross, Mobilization for Justice, Inc.
• Richard Mollot, Long Term Care Community Coalition

Olmstead and the Most Integrated Setting Law in NYS – What it Means for New Yorkers with Disabilities and Older Adults

Starting with an overview of Olmstead and the Most Integrated Setting Law, Primary Focus will be on the work of 3 newly established committees on Olmstead, Deinstitutionalization, Community Services and Employment and will include a brief overview of the formulation of the new State Plan.

 Presented by:

• Douglas Hovey, Independent Living, Inc.
• Bruce Darling, Center for Disability Rights (CDR)
• Harvey Rosenthal, New York Association Psychiatric Rehabilitation Services (NYAPRS)
• Denise Figueroa, Independent Living Center of the Hudson Valley

Think Outside the Box by Exploring Free Ways to Advertise With Google Ad Grants, Earned Media, and Social Media! 

Promote your programs to consumers through advertising options that are worth your time and cost no money! Learn what the options are and what staff needs to manage each one. 

Presented by:

• Michelle West, Aprosae Marketing

Mental Health Impact of the Pandemic

COVID 19 is really two different pandemics. The one we are all familiar with that has cost us over 600,000 lives. The other one is the mental health pandemic that has impacted the lives of countless New Yorkers through increases in depression, anxiety and isolation which has led to loss of life through suicide completion and drug overdose. MHANYS Public Policy Director will discuss how to utilize mental health education as a tool to combat the mental health pandemic as well as discussing the importance of trauma informed care to respond to the long term mental health needs of individuals impacted by the pandemic.

Presented by:

• Glenn Liebman, Mental Health Association of New York State (MHANYS)
• John Richter, Mental Health Association of New York State (MHANYS)

Status of Voting Rights for People with Disabilities

This workshop will feature a panel of advocates and an attorney on the frontlines of the fight to ensure people with disabilities can vote privately and independently in-person and absentee. Hear from a leading attorney who has helped make elections more accessible in New York and in other states as well. Advocates will give an overview of the landscape of voting laws and proposals being put forth at the Federal level that could set all of this progress back.

Presented by:

• Christina Brandt-Young, Disability Rights Advocates
• Michelle Bishop, National Disability Rights Network
• Cliff Perez, Independent Living Center of the Hudson Valley

Promising Approaches for Building Cultural Competence in Human Services and Advocacy Organization

It is quite common for organizations seeking to be more effective in serving diverse communities to skip important steps in their efforts.  This session will provide information regarding the steps needed to increase the capacity of service delivery and advocacy systems  to design, implement, and evaluate culturally competent services. It will provide specific action steps for assessment, action planning and sustaining culturally and linguistically competent policies, structures and practices.  

Presented by:

• Sharonlyn Harrison, Public Research and Evaluation Services

Be the Future; Transforming Employment for People With Disabilities

High skilled technical jobs are the future of workforce. How do we ensure that people with disabilities are included and recognized in the transformation to change the future of employment. 

Presented by:

• Hillary Nichols, Resource Center for Accessible Living (RCAL)
• Frank Falatyn, Fala Technologies

Deadline: July 9, 2021

About the Conference

The New York Association on Independent Living’s (NYAIL) statewide conference brings together more than 400 people with disabilities, older adults, and supporters of the disability rights community to educate, energize and empower the Independent Living movement in New York. 

The last NYAIL conference was held in the Fall of 2019, only a few months before COVID-19 hit New York with brutal force. The pandemic reshaped all of our lives and in turn, brought new challenges to the life saving and life changing work of independent living. We tragically lost thousands of disabled New Yorkers in nursing homes and other congregate care settings, but this also exposed the dangers inherent in these institutions to the rest of society. This year’s theme honors the resiliency in our community and demands reinvention in our existing systems. During this conference, we will reflect on the many lessons the pandemic has to teach us and refocus on how we can come together to change the future. 

Guide for Workshop Proposal Preparation

NYAIL is seeking presenters for twenty-four 75-minute workshops, to be presented throughout the three-day virtual conference. We invite workshop proposal submissions that reflect the conference theme, NYAIL’s mission, and the interests of conference participants. We encourage you to review the content areas outlined in the “Proposal Focus and Audience” section below. 

You may download the guide on this webpage as a Word format document by clicking here.

Workshops will be pre-recorded and presenters will be scheduled for a recording date and a live session time for question and answer. You must have access to recording equipment to record your session.

Submission Guidelines

All proposals must be submitted by close of business on July 9, 2021. Proposals should be submitted using the proposal format outlined below in the “Proposal Outline” section.  All information must be provided. Please send to This email address is being protected from spambots. You need JavaScript enabled to view it. as a Microsoft Word file email attachment with the last name of the lead presenter as the file name. If you have any questions, please contact Aurie Mercer at (518) 465-4650 or This email address is being protected from spambots. You need JavaScript enabled to view it..

Selection Process

Proposals which best address the content areas outlined in the “Proposal Focus and Audience” section below will be given priority. Proposals will be scored by the Conference Committee based on this criterion, as well as: clarity, objectives, likely interest to participants, and overall program balance. Incomplete proposals will not be considered. Applicants will be notified by July 30, 2021, as to whether their proposal has been selected.

Proposal Outline

1. Lead Presenter. The lead presenter is also the contact person and is responsible for notifying all other co-presenters of acceptance, rejection, scheduling, and any other information provided by Please list the following contact information for the lead presenter and provide a brief biographical sketch (30 words maximum):

• Name:
• Title:
• Agency/affiliation:
• Mailing address:
• Phone number:
• Email address:
• Biographical Sketch:

2. Co-presenter(s). Please limit the number of co-presenters to no more than three per 75-minute workshop session. Please list the following contact information for each co-presenter:

• Name:
• Title:
• Agency/affiliation:
• Mailing address:
• Phone number:
• Email address:

3. Workshop Title. The title should clearly describe the presentation (10 words maximum)

• Title:

4. Session Summary. The 1-2 sentence summary in the conference (30 words maximum)

• Summary:

5. The abstract will be used in reviewing and selecting proposals for the conference. Please be as concise as possible, but clearly describe (200 words or less)

• Presentation topic/focus
• Learning objectives
• Outline of presentation content

Conference Accessibility

NYAIL will make all conference presentations accessible to the widest range of people as possible. Guidelines for accessible presentations will be sent to all presenters chosen, and NYAIL will transfer materials to an accessible format if they are submitted by the accessible format deadline (date TBD). Materials may not be distributed to conference attendees if they are not also available in accessible formats.

NYAIL will schedule sign language interpreters and CART for all sessions and will provide materials to attendees in alternative formats, including Braille and large print, when requested.

Proposal Focus and Audience

NYAIL works to:

• Eliminate physical and attitudinal barriers to all aspects of life and to fight for the civil rights and full independence of all people with disabilities.
• Promote the Independent Living philosophy within the disability community, among our partners in health, aging, housing, employment, education, transportation, and other service and advocacy stakeholders, and the public.
• Advocate for systemic changes and resources that will enable people with disabilities of all ages to live independent lives in their communities.
• Strengthen Independent Living Centers (ILCs), the disability rights community, our partners, and service systems, by sharing best practices and innovative strategies.

We encourage proposals in the following areas:

• The Americans with Disabilities Act and Olmstead compliance in NYS
• Community integration barriers and solutions
• Innovative programs, practices and/or collaborations at the local, regional and state levels
• Independent Living Center best practices and program development
• Affordable, accessible and integrated housing for people with disabilities and older adults
• Increasing transportation options for people with disabilities
• Disability policy and advocacy in health and long term care, housing, aging, employment, education, transportation, election reform, and civil rights
• Implementation of mandatory Medicaid managed care and managed long term care
• Successful collaborations with aging organizations
• Best practices/creative solutions for transition across service systems
• Peer services and supports
• Promoting universal design and age-in-place initiatives
• History and future of Independent Living
• Grassroots advocacy and community organizing skills
• Increasing youth involvement in Independent Living and disability rights advocacy
• ILC and nonprofit organization best practices, including financial management, board development, capacity building, and fundraising
• Marketing and communications, including social media
• Empowering change agents, leadership development and promoting change

The above list is not exhaustive — We welcome any proposals that would be of interest to our expected attendees, who include:

• Independent Living Center staff, board members, volunteers, and consumers
• Disability rights organizations
• Older New Yorkers and youth with disabilities
• Service providers in all service systems
• Vocational rehabilitation professionals
• State and local government agencies
• Policymakers
• Business professionals
• Family members and caregivers of people with disabilities

You may download this package in a Word document by clicking here.

Sponsoring the 2021 NYAIL Conference is a great opportunity to put your company or organization in front of more than 400 ILC staff, consumers, service providers, business professionals, government agency representatives, and policymakers. Choose your level of exposure from a variety of opportunities below or download our Prospectus.

SPONSORSHIP LEVELS

RESILIENCE (Lunch Sponsor) | $7,500 (2 Available)

• 1 of 2 exclusive sponsorships to provide lunch to attendees
• Recognition during the opening session plus top logo placement before every workshop session
• 2 minute sponsor-provided video to be played during the opening session
• 1-2 sponsor-provided branded items in NYAIL’s swag bag, shipped to conference registrants (500 items must be rec’d by Sept. 10)
• 6 complimentary conference tickets
• Post-conference recognition with logo and a short message delivered via email to membership and attendees.
• A banner of your logo prominently displayed throughout the Whova conference platform
• Recognition on NYAIL’s Facebook and Twitter pages with a link to your website or social media page

REINVENTION (Break Sponsor) | $5,000

• Exclusive sponsorship of an activity break session.
• Recognition with your logo displayed before every workshop session.
• 4 complimentary conference tickets
• 1 sponsor-provided branded item in NYAIL’s swag bag, shipped to conference registrants (500 items must be rec’d by Sept. 10)
• Post-conference recognition with logo in email to membership and attendees
• A banner of your logo prominently displayed throughout the Whova conference platform
• Recognition on NYAIL’s Facebook and Twitter pages with a link to your website or social media page

EQUITY SPONSORSHIP | $2,500

• Recognition with your logo displayed before every workshop session.
• 2 complimentary conference tickets
• 1 sponsor-provided branded item in NYAIL’s swag bag, shipped to conference registrants (500 items must be rec’d by Sept. 10)
• Post-conference recognition with logo in email to membership and attendees
• A banner of your logo prominently displayed throughout the Whova conference platform
• Recognition on NYAIL’s Facebook and Twitter pages with a link to your website or social media page

LIBERTY SPONSORSHIP | $1,000

• Recognition with your logo displayed before every workshop session.
• 2 complimentary conference tickets
• 1 sponsor-provided branded item in NYAIL’s swag bag, shipped to conference registrants (500 items must be rec’d by Sept. 10)
• Post-conference recognition in email to membership and attendees
• A banner of your logo prominently displayed throughout the Whova conference platform

Conference Registration is Closed as of 9/24 at 5 pm.

Join the New York Association on Independent Living (NYAIL) and over 400 advocates, individuals with disabilities, families, service providers, and independent living center staff, for three days featuring the latest issues in independent living and perspectives on the future.

Over the course of this virtual conference, we will host several workshops by subject area experts.

Please join us September 27, 28, & 29 for NYAIL’s 2021 Biennial Conference.

All conference sessions will have ASL and CART. Live question and answer segments will also have ASL and CART. Slides and video presentations will be described to the audience to ensure accessibility for all participants. Conference sessions will be available through Whova (our conference platform) and Zoom Webinar.

Statewide Conference & Expo
September 10–11, 2019
Albany Capital Center
55 Eagle Street Albany, NY 12207

Tuesday, September 10- Olmstead at Twenty

Susan Jamieson, Esq.
Atlanta Legal Aid
Olmstead Attorney

Susan Jamieson received her undergraduate degree in 1968 from Brown University. Following her graduation, she went into the Peace Corps, where she spent two years in Brazil. Upon returning to the United States she entered Rutgers School of Law and graduated with her Juris Doctorate in 1974.

Since 1980, she has focused on the rights of a person in institutions. This interest began with her concern that this population was isolated, not only from society in general but from legal advocacy in particular. Regardless of the prior economic history of people in institutions, they are, for the most part, poor and without any independent access to advocates. Because this population is inadequately served by the legal community, fundamental rights to liberty and access to critical public benefits are at stake. Sue’s emphasis is on the basic legal rights of this population under state and federal law and finding ways to expand legal and advocacy resources to protect and enforce their rights.

Since then, the work of the ALAS disability rights project has focused on ways to establish mechanisms at the individual representation level to apply and implement the ADA principle of integration. The project has also worked on applying this principle to people in nursing homes, in jails and psychiatric forensic facilities, on waiting lists and in other publicly-funded disability segregated settings, thus bringing these issues within the parameters of the Olmstead case. In this context, the project also advocates for individuals in nursing homes and state institutions seeking Medicaid-funded community-based services who have been denied access to these services or have applied and been denied.

Sue has been recognized for many successes working for the rights of the disabled, including the Atlanta Alliance on Developmental Disabilities’ 2006 Heart of Gold Award, the Emory Public Interest Council lifetime achievement award, and others. She has “mostly” retired from legal aid and works on a part-time basis with the Institute for Disability and Developmental Disability at the University of Georgia.

Simeon Goldman, Esq.
Disability Rights New York

Simeon Goldman is Supervising Attorney at Disability Rights New York where he has worked to enforce the employment, housing, community integration and other civil rights of people with disabilities since 1991. Prior to joining DRNY, Mr. Goldman was Director of Advocacy at the Capital District Center for Independence. He has successfully litigated employment and housing discrimination claims under the Americans with Disabilities Act, the Fair Housing Act, and the NYS Human Rights Law; and has advised elected officials, employers, housing providers, and others on complying with these laws.

Mr. Goldman is an Adjunct Professor at Albany Law School, where he teaches a seminar class on the Civil Rights of People with Disabilities; and has lectured extensively on the rights of persons with disabilities for the NYS Bar Association, the NYC Bar Association, the NYS Division for Human Rights, Cornell University, the National Lawyers’ Guild, and numerous other organizations. Mr. Goldman is a 1986 graduate of SUNY Buffalo Law School and is co-editor of the NYS Bar Association’s three-volume Disability Law and Practice. He is a recipient of the Henry Viscardi Advocacy Award from the NYS Assembly (2013), the Beacon Leadership Award from the Independent Living Center of the Hudson Valley (2011) and the Ted Weiss Consumer Advocacy Award from the Brain Injury Association of NYS (2000).

Bethany Lilly
The Arc of the United States

Bethany Lilly is the Director of Income Policy at The Arc where she specializes in public policy related to Social Security, income supports, paid leave, and poverty. Ms. Lilly joined The Arc in May 2019 after six years at the Bazelon Center for Mental Health Law, where she worked on public policy impacting people with mental health disabilities, with particular focus on employment, poverty, and health care. She served as a co-chair of the Consortium for Citizens with Disabilities Health Task Force and represented the Bazelon Center on other national coalitions and on Capitol Hill, promoting and advocating for the needs and rights of people with disabilities. Prior to joining the Bazelon Center, Ms. Lilly was a law clerk with the U.S. Senate Committee on Health, Education, Labor, and Pensions where she focused on disability, health care, and civil rights policy. Ms. Lilly also served as a legal fellow at the Center for Medicare Advocacy and, while completing her J.D. at Duke University School of Law, worked at the AIDS Legal Project, advocating on behalf of people living with HIV in North Carolina and the Southeast.

Wednesday, September 11- Realizing Systems Change through Legal Action

Michelle Caiola, Esq.
Disability Rights Advocates

Michelle Caiola is Managing Director of Litigation at Disability Rights Advocates. Joining DRA in 2015, Ms. Caiola helped grow DRA’s New York office. In the last several years she has filed and litigated more than a dozen class-wide disability discrimination cases alleging violations of federal and state disability law. These lawsuits include several challenging the MTA’s lack of elevator access in the New York City subway system, the treatment of children with disabilities in New York City’s public schools, and the pervasive inaccessible paths of travel found at the City’s street corners.

Prior to joining DRA, Ms. Caiola acquired extensive federal class litigation experience as a Senior Trial Attorney for the U.S. Equal Employment Opportunity Commission (EEOC) working on disability discrimination in employment as well as ground-breaking pattern or practice cases related to sexual harassment and glass-ceiling pay and promotion discrimination.

Ms. Caiola also served as the Litigation Director at several non-profit organizations: Legal Momentum in New York City, formerly the NOW Legal Defense Fund, and the San Francisco-based Equal Rights Advocates (ERA). In both positions, one particular area of her focus was expanding the intersection of disability and pregnancy discrimination laws to protect women working in low-wage and non-traditional jobs.

Hailing originally from the Midwest, Ms. Caiola earned her J.D. with distinction from the University of Iowa College of Law, spent a year at Washington University in St. Louis Law School, and graduated cum laude from Kent State University in Ohio.

Conference Schedule.
Times are subject to change.

TUESDAY, SEPTEMBER 10

8:00am - 10:00am
Exhibitor Setup

8:00am - 5:00pm
Registration Table Open

8:00am - 9:15am
Continental Breakfast

9:15am - 10:45am
Opening General Session w/
Keynote Panel:  Olmstead at Twenty

• Susan Jamieson, Esq. - Atlanta Legal Aid, Olmstead Attorney
• Simeon Goldman, Esq. - Disability Rights New York
• Bethany Lilly - Director of Income Policy, The Arc of the United States
• Harry Weissman- Disability Policy Consortium

10:45am - 12:00pm
Concurrent Workshop Sessions
-Executive Decision-Making. How to Educate, Inform and Garner the Support of the Highest Levels of State Government
-Advocating for policies protecting people from medical billing abuses
-Housing Rights for Persons with Disabilities under the New York State Human Rights Law
-Peer Integration Program: ACCES-VR & ILC’s Working Together
-Language Acquisition and Communication Access: The Problems Facing Young Children

12:00pm - 12:30pm
Expo

12:30pm - 1:45pm
Luncheon

1:45pm - 3:00pm
Concurrent Workshop Sessions
-Systems Advocacy – Creating Systemic Change in the Current Environment
-The Risk of the QALY: Disability Rights and Prescription Drug Coverage
-Integrating Homeless People with Disabilities into Community Living
-Peer Mentoring: A Proven Process for Successfully Transitioning Individuals Out of Institutions
-Disability, Diversity and Intersectionality at CILS: Why Words Matter and Addressing Micro-aggressions Part I

3:00pm - 3:30pm
Expo & Afternoon Break

3:30pm - 4:45pm
Concurrent Workshop Sessions
-Beyond Policy: The Grit Behind Campaigns for Social Change
-Workforce Integration; past, present, and future
-Services for Those Who Served: Assisting Veterans and Their Families in Your Daily Work 
-Including All People in Health Promotion: Lessons from the Diabetes Prevention Program
-Disability, Diversity and Intersectionality at CILS: Why Words Matter and Addressing Micro-aggressions Part II

6:30pm - 10:00pm
Dinner & Evening Program
David Veatch Award Presentation: Sue Ruff, Southern Tier Independence Center
Evening Entertainment: The Merry Rockers 

WEDNESDAY, SEPTEMBER 11

8:00am - 10:00am
Exhibitor Setup

8:00am - 9:15am
Continental Breakfast

9:15am - 10:45am
General Session w/
Keynote Speaker: Realizing Systems Change through Legal Action

• Michelle Caiola, Esq. - Disability Rights Advocates

10:45am - 12:00pm
Concurrent Workshop Sessions
-Strategies for Effective Communication with Legislators
-Social Media and Modern Day Advocacy: Steps to Take Today, and What to Plan For
-Using Pooled Trusts to Keep Medicaid or SSI
-WIOA, Pre-ETS, and Students with Disabilities
-From Institutions to Community: Providing Independent Living Behavioral Health Services

12:00pm - 12:30pm
Expo

12:30pm - 1:45pm
Luncheon

1:45pm - 3:00pm
Concurrent Workshop Sessions
-Getting Your Story Out on TV, Newspapers and Social Media
-Transition to Medicaid Managed Care for People with Intellectual/Developmental Disabilities
-Medicaid Redesign- A Retrospective Assessment of its Impact on LTC
-BCID’s Community Health Worker Program: A Model for the Disability Community
-Fundraising to Increase Advocacy Activities at Your ILC
-New York's Long-Term Care Planning Project

3:00pm - 3:30pm
Expo

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

Conference 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, The Arc of the United States
• 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, Westchester Disabled on the Move, Inc.
• Marilyn Saviola, Independence Care System
• Valerie Bogart, Evelyn Frank Legal Resources Program

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, Independent Living Center of the Hudson Valley

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., Center for Independence of the Disabled, NY

PEER INTEGRATION PROGRAM (PIP): 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, Westchester Independent Living Center
• Rebecka Palmer, Westchester Independent Living Center
• Dustie Huff, Regional Center For Independent Living

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, Center for Independence of the Disabled, NY
• Joe Rappaport, Brooklyn Center for Independence of the Disabled
• Todd Vaarwerk, Western New York Independent Living, Inc.

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, ACCES-VR
• Laura Hartmann, ACCES-VR

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, Brooklyn Center for Independence of the Disabled
• Yesenia Torres, Brooklyn Center for Independence of the Disabled

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, Barrier Free Living
• LeShan Gaulman, Barrier Free Living

WORKFORCE INTEGRATION: 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, Resource Center for Accessible Living, Inc.
  
  

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, National Association of Chronic Disease Directors
• Aimee Parks, Westchester Independent Living Center

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, Western New York Independent Living, Inc.
• Sarah Lanzo, Independent Living of Niagara County
• Kevin Smith, Mental Health Peer Connection

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, Center for Disability Rights
• Andrea Austin, Center for Disability Rights
  

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 Independence 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, Medicaid Matters New York
• MaryBeth Schneider, The New York Alliance for Inclusion and Innovation

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 Kermani, 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 Kermani, 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-- PARTS I & 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

NEW YORK'S LONG-TERM CARE PLANNING PROJECT

Session Summary

In 2018, Governor Cuomo announced the establishment of the Long-Term Care Planning Project (LTCPP), a joint effort by the New York State Department of Health (DOH) and the New York State Office for the Aging (NYSOFA). This project is designed to understand the projected and desired needs of older adults in New York by examining New York's long-term care system. The LTCPP will analyze, evaluate, and identify existing service gaps in New York's long-term care system, determine the most cost-effective evidence-based interventions, and prepare a strategic plan to meet the emerging needs of New York's aging population over the next decade.

Presenter

• Greg Olsen, New York State Office for the Aging
• Mark Kissinger, Department of Health

Special Thank You to Our 2019 Conference Sponsors:

INFINITE LEVEL -

INDEPENDENCE LEVEL -

New York State Independent Living Council, Inc.

INTEGRATION LEVEL -

ADG Creative

INCLUSION LEVEL -

Southern Tier Independence Center Resource Center for Independent Living

Bond, Schoeneck, & King Attorneys

2019 Conference Exhibitors

NYS ARC Trust Services Consumer Directed Choices

Northeast ADA Center Helen Keller National CenterNot Dead YetCIL Management Suite Captel logo

CONFERENCE EXHIBITORS

THANK YOU TO NYAIL’S 2019 CONFERENCE EXHIBITORS

New York State Division of Veterans’ Affairs

2 Empire State Plaza, 17th Floor Albany, NY 12223

(518) 474-0402

www.veterans.ny.gov

New York State Division of Human Rights

One Fordham Plaza, 4th Floor Bronx, NY 10458

(718) 741-8332

https://dhr.ny.gov

New York State Independent Living Council

111 Washington Ave., Suite 101

Albany, NY 12210

(518) 427-1060

(877) 397- 4126

www.nysilc.org

Center for Disability Rights

497 State St.

Rochester, NY 14608

(585) 546-7510

www.cdrnys.org

ADG Creative

136 Everett Rd.

Albany, NY 12205

(518) 465-7085

www.adgcommunications.com

CIL Management Suite

523 North State Road 198, Suite 204

Salem, UT 84653

(801) 491-0705

www.q90.com

Consumer Directed Choices

7 Washington Square

Albany, NY 12205

(518)464-0810

http://www.cdchoices.org

New York Relay

PO Box 914

Glens Falls, NY 12801 (518) 744-4433

www.nyrelay.com

Northeast ADA Center

Cornell University

Employment and Disability Institute 311 Dolgen Hall

Ithaca, NY 14853

(800) 949-4232

www.northeastada.org

Not Dead Yet

497 State Street

Rochester, NY 14608

(708) 420-0539

http://notdeadyet.org/

Northern Regional Center for Independence

210 Court Street, Suite 107

Watertown, NY 13601

(315)785-8703

http://www.nrcil.net

Resource Center for Independent Living

PO Box 210

Utica, NY 13502

(315) 272-2987

http://www.rcil.com

Southern Tier Independence Center 135 East Frederick Street Binghamton, NY 13904

(607) 724-2111

https://www.stic-cil.org

NYSARC Trust Services

PO Box 1531

Latham, NY 12110

(518) 439-8323

https://www.nysarctrustservices.org/

Helen Keller National Center

141 Middle Neck Road Sands Point, NY 11050 (516) 560-3249

https://www.helenkeller.org/hknc

NYAIL wishes to congratulate,

Sue Ruff of Southern Tier Independence Center for being the 2019 recipient of

The David Veatch Advocacy Achievement Award

Presented at NYAIL's Statewide Conference & Expo, on September 11, 2019.

David Veatch was a young man who was a staunch advocate for home care and consumer-directed personal assistance services throughout New York State. Originally from Long Island, David received his education at Syracuse University, where he majored in journalism at the S.I. Newhouse School of Public Communications. He was President of the Organization for Disabled Students (ODS) and was news editor of Interact, a school-wide video/text system.

Before graduating from Syracuse in 1987, David shepherded several initiatives to make life easier for disabled students on campus. Among those initiatives was; “adopt an administrator,” new curb cuts for sidewalks, and having the elevator in Hendricks Chapel renovated. Throughout his time at Syracuse and for his short career after college, he was a tireless advocate for individuals with disabilities. He spoke at rallies and confronted the policies of Governor Mario Cuomo before the media and a legislative committee. On March 10, 1993, at the age of 26, David died while preparing for a protest.

The David Veatch Advocacy Achievement Award is presented during the NYAIL Statewide Conference & Expo, to an individual who has shown a passion for advocacy for individuals with all types of disabilities.  In presenting this award, we keep alive the memory and spirit of David Veatch, a tireless activist for people with disabilities.
_____________________________________________________

Susan Ruff is a committed advocate for the rights and inclusion of people with disabilities both in her personal and professional life. Ms. Ruff has been an advocate for disability rights for most of her adult life. She adopted a daughter with Down Syndrome and had to constantly advocate to have her included in regular classrooms, as well as religious, recreational and social activities. She believed in and advocated for inclusion for all people with disabilities long before it became a reality in law.

For the last 12 years, Ms. Ruff has been STIC’s SSAN Coordinator and Advocacy Director, where she has been stellar in making connections with other groups, developing advocacy strategies, organizing consumers around issues, helping to build coalitions, and all the other pieces that make for an outstanding advocate. She was instrumental in working with other staff at STIC to form the Southern Tier ADAPT Chapter, and she has participated in several ADAPT actions in Albany and Washington D.C, even being arrested a few times.

Sue Ruff has served as board member of NYSILC, chairs NYAIL’s Inclusive Education Committee, is the past President and active member of the local League of Women Voters of Broome and Tioga Counties, and belongs to or participates on innumerable other boards, work groups, committees and the like. No issue is too small or too big for her to tackle, and she won’t give up as long as there is any hope for success.

Statewide Conference & Expo
September 18–19, 2017

Hilton Garden Inn | Troy, NY

Keynote Speaker: Judith E. Heumann, International Disability Rights Consultant

Judith Heumann is an internationally recognized leader in the disability community and a lifelong civil rights advocate for disadvantaged people. She served as the first Special Advisor for International Disability Rights at the U.S. Department of State from 2010 – 2017. She previously served as the Director for the Department on Disability Services for the District of Columbia, where she was responsible for the Developmental Disability Administration and the Rehabilitation Services Administration.

From June 2002- 2006, Judith E. Heumann served as the World Bank's first Adviser on Disability and Development. In this position, Heumann led the World Bank's disability work to expand the Bank’s knowledge and capability to work with governments and civil society on including disability in the Bank discussions with client countries; its country-based analytical work; and support for improving policies, programs, and projects that allow disabled people around the world to live and work in the economic and social mainstream of their communities. She was Lead Consultant to the Global Partnership for Disability and Development.

From 1993 to 2001, Heumann served in the Clinton Administration as the Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education. Heumann was responsible for the implementation of legislation at the national level for programs in special education, disability research, vocational rehabilitation and independent living, serving more than 8 million youth and adults with disabilities.

For more than 30 years, Heumann has been involved on the international front working with disabled people’s organizations and governments around the world to advance the human rights of disabled people. She represented Education Secretary, Richard Riley, at the 1995 International Congress on Disability in Mexico City. She was a US delegate to the Fourth United Nations World Conference on Women in Beijing, China. She has been active with Disabled Peoples’ International, Rehabilitation International and numerous Independent Living Centers throughout the world. She co-founded the Center for Independent Living in Berkeley California and the World Institute on Disability in Oakland California.

Heumann graduated from Long Island University in 1969 and received her Masters in Public Health from the University of California at Berkeley in 1975. She has received numerous awards including being the first recipient of the Henry B. Betts Award in recognition of efforts to significantly improve the quality of life for people with disabilities. She has received an Honorary Doctorate of Humane Letters from Long Island University in Brooklyn, an Honorary Doctorate of Public Administration from the University of Illinois, Champaign, and an Honorary Doctorate of Public Service from the University of Toledo.

Tuesday, September 19

Keynote Speaker: Rebecca Cokley 

Rebecca Cokley most recently served as the Executive Director of the National Council on Disability, an independent agency charged with advising Congress and the White House on issues of national disability public policy. She joined NCD in 2013 after serving 4 years in the Obama Administration including time at the Departments of Education, Health & Human Services, and a successful stint at the White House where she oversaw diversity and inclusion efforts. Currently she is consulting with civil rights organizations and working on her first book, but Rebecca got her feet wet in advocacy while working at the Institute for Educational Leadership for five years (04-09), building a number of tools and resources designed to empower and educate youth with disabilities and their adult allies. She has spent the last 15 years helping make stronger and deeper connections across civil rights communities and continues to see cross-movement solidarity as the only means of surviving these next four years. In 2015 she was inducted into the inaugural class of the Susan M. Daniels Disability Mentoring Hall of Fame and was the recipient of the Frank Harkin Memorial Award by the National Council on Independent Living. Rebecca has a B.A in Politics from the University of California Santa Cruz, is the proud spouse of Patrick and mother of Jackson and Kaya. 

Statewide Conference & Expo
September 18–19, 2017

Hilton Garden Inn | Troy, NY

Wednesday, September 16th

Thursday, September 17th

Wednesday, September 16th

Thursday, September 17th

Wednesday, September 16th

6:00 am - 9:00 am
Exhibitor Setup  (Ferris Foyer)

7:30 am - 5:00 pm
Registration Table Open  (Ferris Foyer)

8:00 am - 9:00 am
Continental Breakfast  (Ferris Foyer)

9:00 am - 10:15 am
Opening General Session  (Ferris A & B)
Keynote Speaker: Andrew Imparato, National disability rights lawyer and executive director of the Association of University Centers on Disabilities

10:15 am - 10:45 am
Expo  (Ferris Foyer)

10:45 am - 12:00 pm
Concurrent Workshop Sessions

Independent Living Services in County Jails  (Sage I)
This presentation will focus on both the administration and delivery of peer services in jail settings. The presenters will discuss how ILC services succeeded where other organizations could not because of clinical and financial restrictions. We hope that other ILCs will be interested in implementing this delivery model and presenters will answer questions about the negotiations necessary to successfully execute this model. We will also explore how this model may integrate with other activities in health care delivery system reform.

• Scott Danforth, Peer Counselor Jail Program, Northern Regional Center for Independent Living, Inc.
• Karen Bolivar, Associate Director, Northern Regional Center for Independent Living, Inc.

Achieving the Transformation Vision: Update  (Ferris A)
In 2011, New York State embarked on a reform initiative to transform its system of supports and services for individuals with developmental disabilities, one that will modernize outdated system structures that limit individuals' independence and achievement of their goals and create a more person-centered approach to meeting needs and supporting improved outcomes. New York State and the Centers for Medicare & Medicaid Services (CMS) have identified a series of shared goals that will improve opportunities for individuals with developmental disabilities in the areas of employment, integrated living, and self-direction of services. In this session OPWDD Deputy Commissioner, Jo Ann Lamphere, will provide an update on implementation of the transformation agenda.

• Jo Ann Lamphere, Deputy Commissioner for People Centered Supports, Office of People With Developmental Disabilities

The ADA and Medicaid: Next Generation of Long-Term Services and Supports  (Ferris B)
As the ADA celebrates its 25th anniversary and Medicaid celebrates its 50th anniversary, it's important to look back on their evolution, their role in America's health care system, and the role they play for supporting people with disabilities into the future. Nearly a third of individuals today look to Medicaid for their long-term services and supports (LTSS). It is an important component of our nation's shift to a more comprehensive model of social and economic supports that further the inclusion and independence of people with disabilities. This session will explore the next generation of issues in Medicaid LTSS, including workforce participation; the nexus to employer insurance; full community integration; and, sustainability.

• Merrill Friedman, Vice President for Advocacy, Amerigroup Corporation
• Andrew Imparato, Executive Director, Association of University Centers on Disabilities (AUCD)
• Bruce Darling, President and CEO, Center for Disability Rights

Protections For People With Disabilities Under NYS Human Rights Law  (Roebling Library)
New York State Human Rights Law has many of the same protections for people with disabilities as the ADA and the Federal Fair Housing Act. This is true now more than ever since NY incorporated protections found in Title II of the ADA into State law. However, there are some distinct differences between State and Federal protections. Workshop participants will hear from the NYS Division of Human Rights (DHR) about the protections afforded people with disabilities in the areas of housing, public accommodations, and state and local government.

• John P. Herrion, Director of Disability Rights, New York State Division of Human Rights

Understanding the Intersection of Long Term Service and Support Systems for Aging and Disability  (Sage II)
There is a general understanding that there are some similarities between the needs of older adults who may face challenges as they age and those who are faced with a long term disability. It has long been recognized that there is a necessity for integrated services for both of these populations and a number of new initiatives are seeking a holistic approach to develop new services and enhance current ones. NY Connects is a locally based "No Wrong Door" system that provides one stop access to free and comprehensive information and assistance for people of all ages needing long term services and supports. New York is vastly expanding this program; at the same time the state is exploring the feasibility of an Office of Community Living which seeks to improve service delivery and program outcomes for older adults and persons of all ages with disabilities. At this workshop, the State Office for the Aging will present updates to these initiatives and answer your questions.

• Corinda Crossdale, Director, New York State Office for the Aging

MLTC Part 1: Basics of Managed Long Term Care (MLTC)  (Osborne Amphitheatre)
This workshop will explain the basic landscape of Managed Long Term Care (MLTC). This includes who must enroll, how MLTC is rolling out in new counties, how one enrolls in MLTC as a new applicant vs. what happens to people already receiving Medicaid home care and transitioning to mandatory MLTC. The relationship of MLTC and Medicare coverage will be discussed, including the consumer's choices for pairing MLTC with Original Medicare or Medicare Advantage, or choosing a "fully capitated" managed care plan that provides all Medicare and Medicaid services – such as Medicaid Advantage Plus, PACE, or in NYC and Nassau only – FIDA.

• Valerie J. Bogart, Director, Evelyn Frank Legal Resources Program, New York Legal Assistance Group
• Elizabeth P. Siegel, Empire Justice Center

12:00 pm - 12:30 pm
Expo  (Ferris Foyer)

12:30 pm - 1:45 pm
Luncheon  (Ferris A & B)

1:45 pm - 3:00 pm
Concurrent Workshop Sessions

The ADA at 25: How are we doing on key indicators of well-being? How is your region of the state doing compared to the nation?  (Sage I)
This 90-minute presentation and discussion will review the status of people with disabilities on key indicators of well-being: education, employment, transportation, housing, income, poverty, health coverage and family. We will talk about how the status of people with disabilities in New York State and each of its regions compares to the status of people with disabilities at the national level. We will discuss the implications for future civil rights challenges and recommendations to policy makers. Participants will learn how to use U.S. Census data to inform their arguments for change.

• Susan M. Dooha, J.D., Executive Director, Center for Independence of the Disabled, NY

Building Disability Leadership in Opposing Legalization of Assisted Suicide  (Ferris A)
People with disabilities are the natural leaders against the legalization of assisted suicide. The reported reasons for assisted suicide requests in Oregon and Washington where it is legal are related to disability rather than terminal illness. Government reporting forms under "Death with Dignity" laws explicitly accept the notion that suicide is the dignified response to physical dependence, while independent living disproves measures of "quality of life" based on physical condition. The session will include presentations, participant questions, and a sure-to-be-lively discussion. Topics will include: (1) Information on assisted suicide bills and litigation in NY; (2) How to talk confidently with individuals and before groups about the dangers that assisted suicide laws pose to people with disabilities, whether terminally ill or not; (3) How to present information about abuses and problems that have been documented in Oregon and Washington state; (4) How to talk with legislators and media about disability rights concerns in the face of the well funded public relations campaign mounted by assisted suicide proponents; and (5) How to organize cross-disability efforts and work in coalition with faith-based groups. Presenters will use specific examples and materials to explain the current issues, and the full range of strategies will be discussed.

• Diane Coleman, President/CEO, Not Dead Yet
• Bruce Darling, President/CEO, Center for Disability Rights
• Stephanie Woodward, Director of Advocacy, Center for Disability Rights

Addressing the Housing Crisis for People with Disabilities in New York  (Ferris B)
The lack of affordable, accessible and integrated housing is one of the biggest barriers to people with disabilities living independently in the community. There are a number of programs and initiatives which seek to address the housing crisis for people with disabilities in New York. Come hear from the Medicaid Redesign Team (MRT) supportive housing workgroup on some of their exciting new initiatives for people receiving long term care. In addition NYS Homes and Community Renewal (HCR) will highlight some of their programs which assist people with disabilities to obtain accessible housing.

• Mark Kissinger, Director, Division of Long Term Care, OHIP, NYS DOH
• Lisa Irizarry, Director of Special Needs Housing, NYS Homes and Community Renewal

Transformation is Us: Our Lives, Our Choices, Our Community  (Roebling Library)
Representatives of the Self-advocacy Association of New York State, Inc., will discuss SANYS advocacy around the Office of People with Developmental Disabilities' (OPWDD) Transformation Plan. For self-advocates, transformation of OPWDD's system means we will have as much control as we can over where we live, our choices for employment and other meaningful activities, and who supports us. We'll talk about SANYS' view of the HCBS settings rule and the best way to ensure Money Follows the Person (MFP)—self-determination/self-direction.

• Steve Holmes, Administrative Director, Self-Advocacy Association of NY
• Clint Perrin, Statewide Policy Director, Self-Advocacy Association of NY

Overview of Governor's Employment First Initiative  (Sage II)
Over 1 million working-age adults with disabilities live in New York State. Yet their employment and earnings fall far below those of New Yorkers without disabilities. And, according to the US Census Bureau, the gap continues to grow exponentially. The disability community commends Governor Cuomo for responding to this crisis by issuing Executive Order 136, establishing the New York State Employment First Commission (NYSEFC), tasked with making recommendations on how to increase employment opportunities for people with disabilities throughout the state.

• John B. Allen, Jr., Special Assistant to the Commissioner, NYS Office of Mental Health

MLTC Part 2: Navigating MLTC  (Osborne Amphitheatre)
This workshop will focus on how MLTC works for people who are already enrolled. This includes what services are available, how to request new or increased services, how to work with care managers, how/when to change MLTC plans, how to appeal decisions, how to access the fair hearing process.

• Valerie J. Bogart, Director, Evelyn Frank Legal Resources Program, New York Legal Assistance Group
• Elizabeth P. Siegel, Empire Justice Center

3:00 pm - 3:30 pm
Expo  (Ferris Foyer)

3:30 pm - 4:45 pm
Concurrent Workshop Sessions

Do you have civil rights when disaster strikes? The ADA and Disaster Planning  (Sage I)
This 90-minute presentation and discussion will describe the civil rights violations in NYC's emergency planning and disaster response by the federal court in recent litigation. It will provide an overview of agreements negotiated by the parties to remedy those violations dealing with: Shelter; Transportation; Evacuation; Canvassing; Communications; Power Outages; and Reporting and Monitoring. The presentation will identify key components in emergency planning that promote and support inclusion, integration and equal access. This presentation will allow participants to lessons from New York's experience that can apply to their situations; the importance of developing solutions that are cross-disability; strategies for crafting agreements; and making the case for inclusion.

• Susan M. Dooha, J.D., Executive Director, Center for Independence of the Disabled, NY

Using Grassroots Community Organizing To Build Powerful Disability Rights Organizations  (Ferris A)
Community organizing techniques can be used to create powerful local organizations of dedicated and active people with disabilities. This interactive workshop will provide attendees with the basics of community organizing. Attendees will learn the need for collective action on disability issues, how to teach and nurture basic leadership skills, and will explore the Shared history and philosophies of community organizing and the disability rights movement.

• Phil Prehn, Statewide System Advocate, ARISE

Facilitated Session on the New York Statewide Plan for Independent Living (SPIL) for 2017-2019  (Ferris B)
Participate in a facilitated session, providing feedback on the next Statewide Plan for Independent Living (SPIL). Collective feedback during formulation leads to priorities which emerge as content in the plan.

• Brad Williams, Executive Director, New York State Independent Living Council, Inc.

Expanding Youth Peer Advocacy Across Systems: Statewide Trainings and Resources  (Roebling Library)
Youth peer services are expanding in NYS and YOUTH POWER! is leading the way. Learn more about available trainings and how you can be an informed part of the expansion. This workshop will include an overview of the trainings and resources available for young leaders, organizations and supervisors. Participants will learn more about youth peer services, the role of a Youth Peer Advocate and how they can help with the expansion of these services. A particular emphasis will be placed on Youth Peer Services anticipated to be included in managed care.

• Stephanie Orlando, Executive Director, YOUTH POWER!

Phasing Out 14(c): Collaborating toward a Future of Equality in the Workplace  (Sage II)
Under Section 14(c) of the 1983 Fair Labor Standards Act, workers with disabilities can be paid subminimum wages – which the Department of Justice found to be a violation of the ADA based on the 1999 Olmstead decision. This workshop will present on the national advocacy efforts of the National Federation of the Blind to ensure fair wages for workers with disabilities, as well as efforts underway in NYS to phase out sheltered workshops. Workshop participants will learn how people with disabilities are utilizing supported and customized employment strategies to engage in integrated, competitive employment, concluding with an interactive discussion of Section 14(c) and how we can responsibly phase it out.

• Rose Sloan, Government Affairs Specialist, National Federation of the Blind
• Frank Pennisi, Disability Rights and Access Director, Southern Tier Independence Center

MLTC Part 3: Special Medicaid Budgeting Issues in MLTC  (Osborne Amphitheatre)
This workshop will cover spend-down issues in MLTC and special Medicaid budgeting available to people who get MLTC that can reduce or even eliminate a spend-down. These strategies including spousal impoverishment, "community budgeting" that allows short-term nursing home residents to retain more of their income to maintain their home, special needs trusts/pooled trusts, and the MLTC housing allowance for people who were in a nursing home or adult home and are discharged home with MLTC services. While not unique to MLTC, will briefly discuss the Medicaid Buy In for Working People with Disabilities.

• Valerie J. Bogart, Director, Evelyn Frank Legal Resources Program, New York Legal Assistance Group
• Amy E. Lowenstein, Senior Staff Attorney – Health, Empire Justice Center
• Elizabeth P. Siegel, Empire Justice Center

6:30 pm - 10:00 pm
Dinner & Evening Program  (Ferris A & B)
David Veatch Award Presentation to Frank Pennisi and Carrie Bergeron
Special Guest Comedian Andy Pitz

Thursday, September 17th

7:30 am - 5:00 pm
Registration Table Open  (Ferris Foyer)

8:00 am - 9:00 am
Continental Breakfast  (Ferris Foyer)

9:00 am - 10:15 am
General Session  (Ferris A & B)
Keynote Speaker: Jason Braase, a Veteran and member of Warriors Speak, a Wounded Warrior Project program

10:15 am - 10:45 am
Expo  (Ferris Foyer)

10:45 am - 12:00 pm
Concurrent Workshop Sessions

Putting the Pieces Together: Medicaid Redesign & LTC  (Ferris A)
During this session, NYSDOH's Division of Long Term Care leadership will provide an update on mandatory Managed Long Term Care. As MLTC continues to expand throughout 2015 to upstate counties, other programs are being rolled out such as the implementation of the Conflict Free Evaluation and Enrollment Center, the Fully Integrated Duals Advantage program, the Managed Care Ombudsman, and the Balancing Incentive Program (BIP). Hear the DOH vision & definition of care coordination under MLTC and the expectations, roles and relationships of providers and MLTCs.

• Mark Kissinger, Director, Division of Long Term Care, OHIP, NYS DOH

Critical Strategies in Grant Writing for ILCs  (Ferris B)
Mrs. Six will present the most important points a grant writer should consider when choosing which grants to target including mission connection, collaborative partnerships, program development, and budget. Participants in this workshop will learn how to find grant opportunities that match the mission of the organization; work collaboratively with other agencies to create a strong balance of service provision; develop relationships with program personnel to involve them in the process; and think carefully through the budget so that all costs are considered and included. The presentation will demonstrate each step of the process for one successful grant proposal to ensure understanding of how the pieces fit together to result in an effective application that leaves everyone involved feeling enthusiastic about the proposed project. Each participant will be expected to bring questions and personal experiences to the presentation.

• Karen L. Six, Grants Administrator, Resource Center for Independent Living, Inc.

Practical and Effective Uses of Social Media for Engagement and Collaboration Among Disability Organizations  (Osborne Amphitheatre)
This interactive workshop will encourage cross-generational, cross-disability online engagement among CILs and other disability organizations. Learn to embrace social media as a means of communicating with consumers and sharing the important work your organization is doing. The session will cover best practices for using major social media platforms, social media strategy development, and online community building.

• Emily Ladau, Communications Consultant, Social Justice Media Services

Guardianship and other Decision Making Tools  (Sage II)
Sim Goldman of Disability Rights New York (DRNY) will discuss who should consider guardianship, Article 81 vs. Article 17A Guardianship, what decisions can be made by a guardian, rights and responsibilities of the individual and the guardian, corporate/institutional guardianship. He will also cover other methods of substitute decision- making, including the use of a representative payee, power of attorney and healthcare proxy; as well as the new concept of supported decision making.

• Simeon Goldman, Senior Staff Attorney, Disability Rights New York

Strategies for Effecting Positive Systemic Change  (Sage I)
Systems Advocacy can be an effective way to promote an issue in order to influence policy-makers and encourage social change. Are you interested in how the political system works? Do you need to know how you can become a more effective Systems Advocate? This workshop will provide an introduction to Systems Advocacy and factors that can influence the outcome of public policy. Attendees will learn tools and strategies used in Systems Advocacy and when and how to utilize them to impact positive social change.

• Clifton Perez, Systems Advocate, Independent Living Center of the Hudson Valley Inc.

Learning from Our Past to Improve our Future  (Roebling Library)
This workshop will review lessons learned from our most important disability rights leaders, using interview videos provided to the Rehabilitation Research and Training Center for Independent Living Management (RRTC-ILM). Amongst the fourteen advocates who participated on the Pioneers in Independent Living services, we will hear from Justin Dart and Judy Heumann about the advocacy strategies that made the Americans with Disabilities Act a reality.

• Todd Vaarwerk, Western New York Independent Living

12:00 pm - 12:30 pm
Expo  (Ferris Foyer)

12:30 pm - 1:45 pm
Luncheon  (Ferris A & B)

1:45 pm - 3:00 pm
Concurrent Workshop Sessions

Serving Veterans with Disabilities  (Ferris A)
Veterans with disabilities are a population Independent Living Centers have long struggled to engage. This panel is intended to be an interactive discussion geared towards helping centers learn more about how the independent living network can better serve veterans. Panelists will discuss services currently available to veterans through the Veterans Affairs system, as well as the needs of veterans with disabilities and current gaps in services.

• James Arrington, Veterans Service Center Manager, Samuel S. Stratton VA Medical Center
• Jack Downing, Chief Executive Officer, Soldier On
• Dr. Kevin Cahill, Vice President of Treatment, Soldier On
• Jason Braase, Member of Warriors Speak, a Wounded Warrior Project (WWP) program
• Joe Toman, Peer Veteran Advocate, Southern Tier Independence Center

Applying the ADA to Health Plans: Securing Equal Access to Health Care  (Ferris B)
This workshop will cover the legal obligations and responsibilities of health plans under the ADA and New York State Law to provide equal access to people with disabilities. Presenters will describe Plan's responsibilities to provide accommodations in call centers and to ensure ADA compliant provider networks. Presenters will illustrate the issues with case studies will solicit hypothetical case examples from the audience. Attendees will learn strategies for securing their rights for health plans will learn how to file complaints and appeals.

• Heidi Siegfried, Esq., Director of Health Policy, Center for Independence of the Disabled, NY
• Howard Tsai, Health Care Advocate, Center for Independence of the Disabled, NY

Overview of Disability Rights New York  (Osborne Amphitheatre)
Sim Goldman and Evonne Opoku of Disability Rights New York (DRNY) will discuss the Protection & Advocacy System and Client Assistance Program (P&A/CAP) for persons with disabilities in New York. As the P&A/CAP for New York, DRNY advocates for the civil and legal rights for New Yorkers with disabilities. New York residents with disabilities can contact DRNY for assistance with problems directly related to their disabilities. DRNY investigates complaints and provides direct assistance to callers with disability-related issues under the terms of its federal grants and its annual goals and priorities. Information on the history of the program, eligibility, types of services and how to access services will be given.

• Simeon Goldman, Senior Staff Attorney, Disability Rights New York
• Evonne Opoku, Staff Attorney, Disability Rights New York

Meeting the Needs of Persons Living with Brain Injury  (Sage II)
Brain injury is often called the "silent epidemic" because of the staggering number of people who are injured each year. More than 140,000 New Yorkers sustain a brain injury each year. Each year, traumatic brain injuries result in more than 2,000 deaths, 19,000 hospitalizations, and over 112,000 emergency department visits among New York State residents. Brain Injury is never expected, it can strike at any time. It has no cultural, geographic or economic preference and can strike people from all walks of life. When it does it can have far reaching consequences. Effects of brain injury can include impaired thinking or memory, movement, sensation, or emotional functioning. These issues not only affect individuals but can have lasting effects on families and communities. This workshop will encompass: (1) What is brain injury, including statistics, signs & symptoms; (2) How brain injury can occur and common problems after brain injury; (3) Resources and supports, including "take-home" handouts and multimedia materials; and (4) Q & A opportunity. Attendees will leave with a greater understanding of the impact of brain Injury, as well learning about the resources & supports offered to individuals with brain injury -- and their families-- through the Brain Injury Association of New York State and the NYS waiver programs.

• Margo B. Singer, Program Coordinator, Brain Injury Association of NYS

Implementation of WIOA and the Increased Focus on Youth with Disabilities  (Sage I)
Many changes are forthcoming in New York's vocational rehabilitation system, particularly with respect to youth services, as a result of the Workforce Innovation and Opportunity Act (WIOA). Join this panel discussion to learn more about the system changes underway and the opportunities for your center to be part of the process. Presenters will discuss the implementation plans within ACCES-VR and strategies for employment providers to engage youth through a lesson on supporting self-advocacy and disability disclosure. Participants will have the opportunity to learn more about the youth employment programs under WIOA and how to connect with their local areas for skills training, work experience, and other opportunities.

• Frank Coco, Coordinator of District Office Administration, ACCES-VR
• Brianna Valesey, Youth Engagement Consultant, YOUTH POWER!
• Brian J. Williams, Principal Employment & Training Coordinator, Rensselaer County One Stop Career Center
• Jan Hennessy, Senior Project Director, New York Association of Training & Employment Professionals (NYATEP)

Supported Decision-Making: From Justice for Jenny to Justice for All!  (Roebling Library)
An informative and interactive introduction to Supported Decision-Making – an alternative to guardianship where people with disabilities work with trusted friends, family members, and professionals to receive the assistance they need and want to understand the situations and choices they face, so they can make their own decisions. Supported Decision-Making makes the person, rather than a guardian, the ultimate decision-maker in some or all areas in his or her life, according to the person's choices and abilities. As a result, it increases the person's self-determination, which has been directly linked with increased life outcomes like independence, employment, community integration, and safety. Using the "Justice for Jenny" case as background, this presentation will provide attendees with information on the science and studies behind Supported Decision-Making, examples its use across the country and internationally, and practical applications for it in education, employment, and health care planning. In addition, the presentation will discuss ways that we can change laws, policy and practice to increase access to supported decision-making as an alternative to guardianship.

• Jonathan Martinis, Legal Director, Quality Trust for Individuals with Disabilities
• Samantha Crane, Legal Director and Director of Public Policy, Autistic Self Advocacy Network

3:00 pm - 3:30 pm
Expo  (Ferris Foyer)

Celebrating 35 Years of Independent Living in New York

Yesterday's Dream | Today's Reality | Tomorrow's Vision

September 10th-11th, 2013

The Hilton Garden Inn

235 Hoosick Street

Troy, NY 12180

ABOUT THE CONFERENCE

Approximately 250 people celebrated 35 years of Independent Living in New York at NYAIL's 2013 Statewide Conference.

Thirty-five years ago, the first Independent Living Center in New York was founded in New York City. Today, over 30 ILCs across the state continue to champion the rights and equality of all people with disabilities with a younger generation of leadership emerging. While the concept of Independent Living has expanded and become more widely recognized, there remains much work to be done to continue ensuring equal opportunities for all people with disabilities, as well as promoting the Independent Living philosophy both within the disability community and to the public.

WHO ATTENDED

The conference provided valuable information to almost 250 people with disabilities and their families, board members and staff of Independent Living Centers and other disability rights organizations, vocational rehabilitation professionals, policy makers, older New Yorkers, youth with disabilities, government agency representatives, and local business professionals.

PROGRAM BOOK

Tuesday, September 10, 2013

Wednesday, September 11, 2013

• Independent Living in Video: Our History, Our Leaders, Our Vision
  A video montage of our Dynamic History. Remembering our past to create a better future. Also, on Tuesday evening a selection of Disability related feature movies will be available for viewing.
  
  
• Overview of Key OPWDD Initiatives and Objectives
As OPWDD pursued development of the People First Waiver, they worked with CMS to define priority elements of system transformation, including: expanding opportunities and supports for employment; expanding community service options, including supportive housing and community-based services; expanding self-direction options, and creating opportunities for people to move from institutions to integrated settings. Learn more about the many reform initiatives underway in the OPWDD system.
• Gerald Huber, Deputy Commissioner Person-Centered Supports, Office of People with Developmental Disabilities
  
  
• Engineering That Matters: An Undergraduate Engineering Design Experience in Service of the Disabled and Elderly Communities
  A two semester capstone design course sequence is the culminating challenge facing undergraduate bioengineering majors at Binghamton University. Student teams are challenged to design, fabricate, test and deliver devices to clients under the careful tutelage of engineering faculty advisors. Over the course of the last two years, the focus of the design experience has been in developing devices for the disabled and elderly community in the Upstate New York region. A list of successful projects include a water flotation device for a resident with cerebral palsy, an automatic pill dispenser for a quadriplegic resident, all terrain wheel chair and assistive rowing device for guests at Sky Lake Camp in nearby Windsor, New York and a web-based practice site that serves to augment the efforts of a practicing speech therapist and an inexpensive lift system for an elderly resident who otherwise would remain house-bound. The actual procedure that is followed for soliciting and identifying design projects will be described, followed by an opportunity for participants to identify their own possible projects for inclusion in this year's capstone design class.
  • Dr. George D. Catalano, Professor of Bioengineering and Faculty Master of Apartments Community, Binghamton University
  • Cheri Robinson, TRAID Coordinator and Accessibility Consultant, Southern Tier Independence Center
    
    
• Capacity Building Opportunities between Aging and Disability Services
  The missions of the OFA and the ILC are remarkable similar yet service provision has been slow to match. In Ulster County we have developed a collaboration that improved service provision through cross referrals, cross training, sharing staff and participating more actively in each other's community events. Using a power point presentation as a basis for discussion we will provide specific examples of activities, communication, shared staff and the events that lead to a successful more sophisticated partnership creating a win-win situation for both organizations and clients.
  • Susan Hoger, CEO, Resource Center for Accessible Living, Inc.
  • Anne Cardinale, Director, Ulster County Office for Aging
    
    
• Developing a Strategic Plan for your ILC
  This workshop will focus on the key elements of developing a strategic plan, preparing Independent Living Centers to develop and expand their ability to navigate the future, while managing constant change.
  • Edward McCormick, McCormick Consulting Services, Inc.
    
    
• Update on Long Term Care Initiatives within NYS Department of Health
  Learn about the multiple intersecting long term care initiatives underway through the NYS Department of Health, including the implementation of Managed Long Term Care, Fully Integrated Duals Advantage (FIDA) demonstration the Balancing Incentive Program (BIP), and the expansion of the Money Follows the Person program.
  • Mark Kissinger, Director, Division of Long Term Care, NYS Department of Health
    
    
• "Since America '73 – The NY Movement's Accomplishments, Past and Future"
  Forty years ago, the PBS series "America '73" aired an unprecedented full-length profile of the then-novel Disability Rights Movement, including a startlingly frank panel discussion. In the fortieth anniversary of that broadcast, a panel (including several original participants) will look back at the accomplishments of the past forty years, assess the extent to which the hopes and discontents of that era have been addressed, and look ahead to the agenda for the next generation.
  • Warren Shaw, Historian
  • Anna Fay, Independent Care System
  • Marilyn Saviola, Independence Care System
  • Denise Figueroa, ILC of the Hudson Valley
    
    
• Medicaid Mandatory Managed Long Term Care: Observations from Consumer Viewpoint in First Year
  After seven months of mandatory enrollment in New York City, Valerie will address concerns about continuity of care, access to services for high-need individuals, grievance and appeal rights, and other issues affecting access.
  • Valerie J. Bogart, Esq., Director, Evelyn Frank Legal Resources Program, New York Legal Assistance Group
    
    
• Assessing the Unment Needs of Older Individuals: A Community Collaboration
  Stakeholders and service providers for people with disabilities are not always aligned to advance the common goals of equality, opportunity and inclusion in all aspects of community life. In Cortland County New York, a like-minded collaboration of higher education, ILC and Aging experts produced a needs assessment that revealed opportunities for deepened understanding of the unmet needs of older individuals who are most at risk for falling through service gaps, either due to isolation stemming from disability, and/or lack of access to communication, information and transportation.
  • Chad W. Underwood, Chief Operating Officer, Access to Independence of Cortland County, Inc.
  • Dr. Judy K. C. Bentley, Associate Professor, Foundations & Social Advocacy Department, State University of New York College at Cortland
  • Elizabeth Haskins, Executive Director, Cortland County Area Agency on Aging
    
    
• The Latest on High School Diploma Options and Alternatives
  Participants will gain a practical understanding of the many recent changes in diploma requirements and alternative credentials for students with disabilities, including the Regents and Local Diplomas, Skills and Achievement Credential, NYS Career and Occupational Studies Certificate, the GED and others. We'll also cover strategies for success in achieving these credentials.
  • Julie Michaels-Keegan, Disability Rights New York
    
    
• Disasters, Hurricanes, Snow Storms, Floods – What We've Learned about Disaster Preparedness for People with Disabilities.
  Since September 11th, people with disabilities have experienced what it's like not to have a plan for emergency preparedness that includes us. This panel will join all of its attendees in identifying where the gaps are, what we've documented, and how local and state policymakers can help.
  • Margi Trapani, Center for Independence of the Disabled, NY
  • Sue Ruff, Southern Tier Independence Center
  • David Whalen, Niagara University
  • Julie Cardone, Commission for the Blind
    
    
• Assessing the Health of your CIL
  If RSA were to review your CIL tomorrow, would you be ready? This training, developed directly from RSA's onsite review tool, walks you through what to do (and not to do!) to prepare for an RSA onsite review or to conduct your own internal review to assess the health of your CIL.
  • Paula McElwee
  • McElwee is the Technical Assistance Coordinator for ILRU, supporting CILs that need intensive support (usually referred by RSA or the state IL Unit) and centers that self-refer for specific TA needs. She has been involved in IL since 1979, when she served as the director of one of the first ten centers funded under the Rehab Act. She has served on a SILC, as a board member for a CIL, and as an interim director for four California centers. She lives in Fresno, CA.
    
    
• New State Disability Initiatives
  On June 1, 2013 Disability Rights New York (Disability Advocates, Inc.) became New York State's designated Protection and Advocacy System and Client Assistance Program (P&A/CAP), assuming responsibility for all of the P&A/CAP Programs in the state. Shortly thereafter on June 30with Special Needs began operations. The Justice Center is a new state agency created through legislation known as the "Protection of People with Special Needs Act" to reform how the state protects people with disabilities from abuse and neglect.
  • Jeff Wise, Executive Director, NYS Justice Center
  • Tim Clune, Executive Director, Disability Rights New York
    
    
• MRT Affordable Housing Workgroup Initiative
  In 2011, Governor Cuomo created the Medicaid Redesign Team's Affordable Housing workgroup to evaluate and make recommendations regarding New York's programs of supportive housing. Since then, over $150 million in funding has been allocated to increase housing options for people with disabilities through increased State agency housing and service subsidies, the creation of new supportive housing units, capital funding, and new pilot programs, including a Nursing Home to Independent Living Rapid Transition program. Learn more about the committee's work and the projects funded todate from this panel of workgroup members.
  • Liz Misa, Deputy Medicaid Director, Office of Health Insurance Programs, NYS Department of Health
  • Doug Hovey, Executive Director, Independent Living Inc.
  • Paul Feuerstein, President/CEO, Barrier Free Living
  • Ted Houghton, Supportive Housing Network of New York
    
    
• Lead on: Bringing the next generation to the table
  In this workshop YOUTH POWER! (YP!) employees will discuss strategies centers can use to support emerging young leaders. We will give an overview of YP! and explain the support we can offer centers. We will also ask centers to support our efforts to grow and diversify the YP! network through specific requests. We will challenge centers to think of how they can include youth and young adults in leadership roles. The workshop will include how-tos and useful information that centers will be able to use.
  • Stephanie Orlando, Executive Director, YOUTH POWER!
  • Zach Garafalo, Assistant Director, YOUTH POWER!
  • Melanie Hecker, Youth Engagement Consultant, YOUTH POWER!
    
    
• NYS municipality response (or lack thereof) to the disability community
  Niagara University has developed an innovative program called Town Hall Training. This customized curriculum is designed to train and educate individuals to work with their municipal representatives to respond to the needs of people with disabilities and ensure awareness, acceptance and accessibility. Conversely, it educates municipal employees on how to properly respond and work with the disability community while providing the necessary tools for both inclusion and compliance. This program is a direct link to ILCs throughout NYS, and directs municipalities to partner with them.
  Also addressed will be the First Responders Disability Awareness Training rollout to Law enforcement throughout NYS, the initial phase of Firefighter/EMS training, and the development of the 911 operators program. Attendees will learn how they can become active in this program.
  • Dave Whalen, Statewide Project Coordinator, Niagara University
    
    
• Disability Competence: An Experiential Learning Approach
  Independence Care System (ICS) is a Medicaid Managed Long Term Care Plan that focuses on serving adults with physical disabilities. ICS developed this training for its staff to increase their understanding of the disability experience and their awareness about their own emotional responses to disability. The expected outcome is a greater comfort level for communication with members in general and especially if there is conflict or disagreement. Key content areas that are unique to disability were identified, such as isolation and institutionalization. The training methodology includes guided imagery, small and large group discussion, interactive presentations, and role plays.
  • Anna Fay, Director of Independent Living Services, Independence Care Systems
    
    
• The Affordable Care Act: New Coverage Options and Protections Coming
  With Exchange enrollment beginning next month, this workshop will cover new health coverage options in 2014, including expanded Medicaid eligibility and premium subsidies for the new health plans that are becoming available for people who do not have coverage through their jobs. Presenters will use simulated case studies to illustrate how to help consumers to enroll in Medicaid or select a health plan with the benefits, providers, premium, and cost sharing that works best for them. Presenters will solicit hypothetical case examples from the audience for this exercise. Attendees will also learn how to appeal eligibility determinations, premium subsidies, and cost sharing caps. We will review existing consumer protections as well as those coming in 2014. For individuals who have an official disability determination, we will discuss other available programs, including the Medicaid Buy-In for Working People with Disabilities and Excess Income (Spenddown). Participants will leave with at least one idea for helping more people enroll in the new coverage options available through heath reform.
  • Heidi Siegfried, Esq., Director of Health Policy, New Yorkers for Accessible Health Coverage, Center for Independence of the Disabled
  • Greg Otten, Community Health Advocates Coordinator, Center for Independence of the Disabled, NY
    
    
• 23 years after ADA: The Transportation Problems that Remain Unsolved
  Long time disability rights attorney and transportation advocate, Jim Weisman, will review the transportation problems that remain for people with disabilities 23 years after the Americans with Disabilities Act, including the ongoing fight for accessible taxis in New York City.
  • Jim Weisman, United Spinal Association
    
    
• How to Build Ramps to Make Homes Accessible Without Government Funding
  If your county does not offer funding for ramps, this session will explain how to develop a program which uses volunteer labor and materials paid for through donations to build ramps for consumers. Learn about the building codes, community involvement and how to prioritize need.
  • James Karasek, Manager of Independent Living Skills, ARISE
  • Kristin Rabideau, ARISE
    
    
• Fearless Feedback: Optimizing People Resources with Self-Management and Engagement
  Fearless Feedback is a leadership model and set of tools enabling organizations to optimally engage the hearts and minds of all employees even in the face of challenging times. Fearless Feedback improves the work environment so employees take responsibility for their own performance and development while willingly improving the quality of their interactions. Fearless Feedback results in higher quality communication and a greater level of personal responsibility.
  • Wally Hauck, PhD, CSP, President Optimum Leadership
  • Beth Abarca, Director of Human Resources, Independent Living, Inc.
    
    
• Grassroots Organizing
  Systems advocacy is a core ILC function with the purpose of removing barriers that persons with disabilities encounter in independent living. Systems advocacy's goal is to alter the relationships of power and effect long-term change. Using the tools of grassroots advocacy including the 'pitchfork approach', people mobilize their knowledge and energies, pick priorities, educate the community and celebrate victories.
  • Chris Hilderbrant, Center for Disability Rights
    
    
• Housing Advocacy & Services: Creating Order Out of Chaos
  All communities struggle to overcome housing issues. Often, housing services, providers, developers, and governments are disconnected. They work independently with minimal knowledge of the others' needs and efforts. Affordable, accessible and integrated housing is an area severely lacking in most communities. This workshop will offer a framework and tools to make a significant impact in these housing areas through persistent advocacy and development of unique services.
  • Aaron T. Baier, Consumer & Systems Advocacy Coordinator, Access to Independence of Cortland County, Inc.
  • Audrey Jones, Architectural Barrier Programs Coordinator, Access to Independence of Cortland County, Inc.
    
    
• “Of all the forms of inequality, injustice in health care is the most shocking and inhumane”
  Health care is changing. Our goal is to make it change for the better. This workshop is about one tool to use to change things in health care for the better. We will review civil rights complaints to the U.S. Department of Health and Human Services Office of Civil Rights. What does disability discrimination look like in health care? How do we collect the evidence about discrimination? Do we have enough evidence for a complaint? How do we file the complaint? What will happen after we file the complaint? Are there other places to complain to? What are the advantages and disadvantages of each?
  • Lourdes Rosa-Carrasquillo, Esq., Center for Independence of the Disabled, NY
    
    
• Transition: Facing the challenges of achieving independence after completing a secondary education
  The needs for students with intellectual disabilities are going unmet in our educational system. High schools are required to provide curricula established by the State Education Department that emphasize contents dictated by the Board of Regents. Many students with a mental illness diagnosis and students with physical, emotional, or sensory disabilities are completing their high school education with only a certificate, unprepared for continuing education, employment, or independence. Without transition services these youth may be unable to function in the community as they approach adulthood. Western New York Independent Living (WNYIL) offers a transition program to high school seniors with intellectual disabilities to increase youth involvement in Independent Living skills and disability rights advocacy. This project allows an underserved population to receive the knowledge of and the means to exercise their rights and take advantage of programs and services to improve their quality of life through continued education and/or vocational training.
  • Sarah K. Lanzo, Director, Independent Living of Niagara County
    
    
• Surviving and Thriving in a Managed Care Environment
  As implementation of mandatory managed care and managed long term care moves full steam ahead in New York, Independent Living Centers must partner with Managed Care Organizations (MCOs) to ensure the incorporation of Independent Living in Managed Care Models and the Affordable Care Act (ACA). This workshop will discuss opportunities and best practices for ILCs to thrive in a managed care environment. We will also identify strategies and tactics for Centers so they can continue to advocate and provide services to their consumers as well as sustain and grow their core business.
  • Merrill Friedman, Vice President for Advocacy at Amerigroup Corporation
  • Bruce Darling, President and CEO, Center for Disability Rights
    
    
• The Ongoing Federal Budget Fight: Action Campaigns Across New York
  Since the 2010 elections, Congress and the President have been engaged in a protracted political battle over federal budget policy, and advocates for various constituencies, including the disabled, have mobilized to assert the public's interest. Among the things at stake are the future of Social Security, Medicare, Medicaid, SNAP/Food Stamps, SSI, and other vital social programs that millions rely on – all are in the bullseye of anti-deficit hawks. Here in New York, the statewide, multi-constituency "Restore the American Promise" (RAP) campaign, and its New York City component, "No Bad Grand Bargain", are spearheading the fight-back. Learn how various advocates and activists across New York are responding together to engage our Senators and Congressmembers, the public, and the media, and how the disability community can participate in and enhance these campaigns.
  • Mark Hannay, Director, Metro New York Health Care for All
  • Mary Clark, Southern Tier Regional Director, Citizen Action of New York
  • Heidi Siegfried, Health Policy Director, Center for Independence of the Disabled–New York
    
    
• Community First Choice Implementation Update
  NYAIL has been at the forefront of advocacy and implementation efforts for the Community First Choice Option (CFC) in New York. The State committed to and is in the process of implementing the Community First Choice Option (CFC), with a target start date of October 1, 2013. CFC, made available to states through the federal Affordable Care Act (ACA), is a Medicaid program that creates a service delivery system and a comprehensive benefits package to provide assistance for physical, cognitive and social needs to support individuals with disabilities and older adults in the community. Implementation of CFC has the potential to fundamentally reform the state's Medicaid long term services and supports system to more effectively serve a complex cross-disability, cross-age population. Attend this workshop to learn about the latest updates on CFC in New York, and what it means for the disability community in our state!
  • Bruce Darling, Center for Disability Rights
  • Norain Siddiqui, Center for Disability Rights
    
    
• Customized Employment: A Personalized Approach to Job Placement and Retention
  Customized Employment individualizes the relationship between job seekers and employers in ways that meet the needs of both, therefore breaking away from a more traditional labor market approach and opening up employment opportunities for all. Job Path has been using this model since 2004, working with individuals with developmental disabilities in various ACCES-VR and OPWDD funded programs. This approach has been extremely successful in creating not only good employment matches but also increased job retention. In this workshop, we will explore the steps in our Customized Employment process – discovery, vocational profile, planning meeting, customized job development and support. We will discuss examples of jobs created as well as challenges and solutions.
  • Katrina Reese, Job Path, Inc.
  • Ryan Finger, Job Path, Inc.
    
    
• Making Healthcare Accessible to People with Disabilities
  Independence Care System (ICS) and New York Lawyers for the Public Interest (NYLPI) have long heard complaints from individuals with all types of physical disabilities about the pervasive inaccessibility of health care in New York. These barriers exist in facilities of all sizes, including Hospitals, community clinics, and doctors' offices, in contravention of laws that mandate equal access for people with disabilities. The time for accessible healthcare in New York for people with disabilities is long overdue.
  This presentation will summarize the findings of the Report BREAKING DOWN BARRIERS BREAKING THE SILENCE regarding access to Women's Health Care and apply them to health care in general.
  • Marilyn E Saviola, Vice President of Advocacy and the Women's Health Access Program, Independence Care System

THE 20TH ANNIVERSARY OF THE AMERICANS WITH DISABILITIES ACT: ADVANCING THE PROMISE FOR JUSTICE

October 5-6, 2010
The Hilton Garden Inn & The Rensselaer Banquet and Conference Facility 
235 Hoosick Street | Troy, NY 12180

About the Conference

More than 250 people with disabilities and older New Yorkers will be taking action for independence at NYAIL's 2010 Statewide Conference. This year is the 20th anniversary of the Americans with Disabilities Act, the foundational civil rights legislation which prohibits discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications.

While the ADA was passed with great hopes for increased inclusion of people with disabilities of all ages in society, the promise for justice has been incompletely realized. To advance that promise, now and in the future, disability advocates and their supporters will need to take action for independence and justice. NYAIL's 2010 Conference is an opportunity to create a roadmap to a future in which the barriers to full community integration for people with disabilities are removed and the promise of the ADA is fulfilled in New York State.

The conference will provide valuable information to people with disabilities and their families, board members, and staff of Independent Living Centers and other disability rights organizations, vocational rehabilitation professionals, policy makers, older New Yorkers, youth with disabilities, government agency representatives, and local business professionals.

Who Should Attend

The conference will provide valuable information to people with disabilities and their families, board members, and staff of Independent Living Centers and other disability rights organizations, vocational rehabilitation professionals, policy makers, older New Yorkers, youth with disabilities, government agency representatives, and local business professionals.

KEYNOTE SPEAKERS 

Stephen F. Gold is an attorney who specializes in civil rights and represents only persons with disabilities. Besides representing numerous individuals with disabilities in discrimination lawsuits, he also represents ADAPT and NOT DEAD YET.

Mr. Gold successfully argued the case, Helen L., that a state discriminates against a person by requiring them to receive services in a segregated nursing home, rather than providing them services in the community. This lawsuit established the legal principle that persons with disabilities are entitled to receive services "in the most integrated setting appropriate" to their needs and the failure to provide those services was discriminatory. The Supreme Court in the Olmstead decision followed the legal principle and consequently, "the most integrated setting" is now the law of the land. As a result of this lawsuit, advocates can help people in nursing homes live in the communities with personal assistance services.

His Information Bulletins, which have a national circulation of more than 6,000 advocates and persons with disabilities, have dealt with housing, nursing homes, education, and medical assistance.

Ari Ne'eman is the Founding President of the Autistic Self Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is an adult on the autism spectrum and a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. In April 2010, he was appointed by Secretary Sebelius as a public member to the Interagency Autism Coordinating Committee, a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism. In 2009, President Obama nominated Ari to the National Council on Disability, a federal agency charged with advising Congress and the President on disability policy issues. He was confirmed by the Senate in July 2010. He is both the youngest and the first Autistic member of the National Council on Disability. He has a bachelor's degree from the University of Maryland-Baltimore County, where he studied political science in the Sondheim Public Affairs Scholars Program.

CONFERENCE PROGRAM

Monday, October 4, 2010

Tuesday, October 5, 2010

Wednesday, October 6, 2010

20 Years of the ADA: What We’ve Won and What We’ve Lost [Ferris A]

This workshop will provide an overview of ADA’s mandates for change, along with what was intended by the Congress and the advocates who pushed for change twenty years ago, distortions of ADA’s meaning and intent by the courts, and significant defeats and victories. Areas specifically to be addressed include transportation, communication and employment, among others.

• Presenter: James Weisman, General Counsel, United Spinal Association

Making Health Care Reform Work for Us in New York State [Ferris B]

Health Care Reform is law, but implementation depends on guidance issued by the Federal Department of Health and Human Services and choices made by New York State policymakers. Learn how to impact these decisions.

• Presenter: Heidi Siegfried, Esq., New Yorkers for Accessible Health Coverage, Center for Independence of the Disabled, NY
• Conference Presentation

Partnering with Americorps to Create Systems Change [Osborne Amphitheatre]

AmeriCorps grant projects offer the possibilities of recruiting more people with disabilities into the Independent Living Movement and investing in people who can be extremely focused on a specific systems change activity. Learn how you can develop full time volunteers who dedicate their time and energy to your systems change priorities. 

• Presenter: Jason Wheeler, National Service Inclusion Project

Employment First: OPWDD’s Platform for Increasing Community Employment and Contribution [Sage II]

The Office for People with Developmental Disabilities is committed to increasing the number of people with developmental disabilities who have jobs in their communities. This presentation will describe OPWDD’s Employment First platform for achieving this goal. 

• Presenter: Robert Noble, NYS Office for People with Developmental Disabilities (OPWDD)
• Conference Presentation

Special Education Advocacy Tips [Sage I]

The Individualized Education Program (IEP) is a comprehensive document that details a school district’s obligation and a student’s rights under special education.  The wording of this document is frequently lost in the complex process of its development.  This session will provide advocacy tips on how to maximize your Committee on Special Education (CSE) meeting to obtain a workable, meaningful IEP for the student.  This session will also discuss the new form IEP that will be used by all New York State Public Schools starting in the 2011-2012 school year.

• Presenter: Jennifer Monthie, Esq., Disabilities Advocates, Inc.
• Conference Presentation
   
• EP Form Handout

Liveable New York – Sustainable, Livable Communities for ALL Ages and Disabilities [Roebling Library]

This workshop will provide a detailed explanation of what makes a community “livable,” nationwide trends fueling the “livable communities” movement, and a NY State initiative to help municipalities use a community-driven, inclusive planning approach that responds to all community sectors and residents of all ages and abilities. 

• Presenter: Vera Prosper, PhD, New York State Office for the Aging

Part I – A Time for Change: Vermont’s Conversion from Sheltered Workshops to Community Employment [Ferris A]

The task of converting sheltered workshops to community-based employment can be a daunting and challenging task. But once people are included in the workforce, there is no turning back. The community is the natural state for all of us, including people with disabilities. Join Bryan Dague as he shows participants how Vermont became the first state to eliminate sheltered workshops. He will discuss the timeline, actions taken, and barriers experienced along their journey to full community employment as a supported service for all!

• Presenter: Dr. Bryan Dague, Center on Disability & Community Inclusion, University of Vermont

Affordable/Accessible Housing Development in New York: Overview and How People with Disabilities Can Impact the Process [Ferris B]

This workshop will include a description of the state’s affordable/accessible housing financing and development programs and processes, including independent and supportive housing, and nyhousingsearch.gov, the state’s housing locator website. In addition, the speaker will discuss local and statewide pressure points through which people with disabilities can impact the development of affordable, accessible and integrated housing in local communities.

• Presenter: Lisa Irizarry, NYS Department of Housing & Community Renewal
• Conference Presentation

Facing the Boogeyman: Conquering the Fear of Direct Action Advocacy [Sage II]

Is your CIL afraid to do advocacy because of what it might entail? Are you worried that your 501 (c) 3 status will be in jeopardy? Do you feel that your image, credibility, or standing in your community will be negatively affected by engaging in advocacy?  The purpose of this session is to debunk the myths and fears that CILs may have about doing direct action advocacy. A panel of advocates will lead the session, and discuss various forms of advocacy, including the “pitchfork method”, advocacy and non-profit status, and maintaining credibility while engaging in advocacy.

• Lead Presenter: Anita Cameron, Center for Disability Rights
• Co-Presenter: Diane Coleman, Center for Disability Rights
• Conference Presentation

Autism’s Emerging Culture: Disability Rights for Everyone [Sage I]

Autism is considered an epidemic and a national health concern.  What it truly is, is a reminder the fight for disability rights is far from over.

• Presenter: Robert M. Deemie, Southern Tier Independence Center

Getting to Know Us…Benefits of Partnerships with the New York Council of Nonprofits, Inc. [Roebling Library]

Through our partnership with New York Council of Nonprofits, Inc., your membership with the New York Association on Independent Living provides you with access to all NYCON member benefits, training, education and information, including sample policy and procedures templates.  Attend this informative session to help you better understand all of the membership benefits now available to you.

• Lead Presenter: Valerie Venezia, New York Council of Nonprofits, Inc
• Co-Presenter: Eric Laughlin, Council Services Plus, Inc.
• Conference Presentation
• Conference Handout

Home of Your Choice: Housing for People with Intellectual and Developmental Disabilities [Great American Grill]

This presentation will focus on all of the programs offered by the Office for People with Developmental Disabilities’ Office of Housing Initiatives and Support, varying from special mortgage packages, down payment assistance, foreclosure prevention and match-savings programs.

• Lead Presenter: Robert Addis, NYS OPWDD Office of Housing Initiatives and Support
• Co-Presenter: Alexander Brooks, NYS OPWDD Office of Housing Initiatives and Support

Universal Design, Visitability, and Resources for Home Modifications [Ferris A]

This presentation will give an overview of Universal Design, Visitability, and Resources for Home Modifications. It will define the housing problem, changing demographics, consequences of housing barriers, and obstacles to inclusive housing. The presentation will discuss Levels of Access as an inclusive housing strategy and give an in-depth look at visitability. It will also discuss housing designed for the lifespan and the IDeA center’s home modifications program. The presentation will review some of the voluntary and mandatory housing policies regarding visitability. It will also give some specific housing design strategies for creating an inclusive home by showing examples of Best Practices.

• Presenter: Jonathan White, M. Arc

Assisted Suicide & Euthanasia: ADA Violations and the Ultimate Discrimination [Ferris B]   

Learn about national and state controversies on assisted suicide and involuntary passive euthanasia. What powers do third parties have to withhold life-sustaining treatment without your consent or against your will?  

• Presenter: Diane Coleman, Not Dead Yet
• Conference Presentation

New York Makes Work Pay: Employment for People with Disabilities [Osborne Amphitheatre]

This forum will provide an introduction and overview of the New York Makes Work Pay, an initiative designed to expand New York’s capacity to support individuals with disabilities with a desire to work.

• Presenter: Michael Seereiter, NYS Office of Mental Health, Office of Consumer Affairs
• Conference Presentation

Literacy Zones and Independent Living Centers [Sage II]

Literacy Zones and Independent Living Centers share common interests in building pathways out of poverty for families and individuals.  The workshop will focus on one well developed partnership and consider a variety of ways ILCs can partner with Literacy Zones.

• Lead Presenter: Robert M. Gumson, NYS Office of Vocational and Educational Services for Individuals with Disabilities
• Co-Presenter: Dr. Joan O’Gorman, Yonkers Public Schools
• Co-Presenter: Susan Naber, Yonkers Literacy Zone 
• Co-Presenter: Joseph Bravo, Westchester Independent Living Center
• Conference Presentation

Collaborative Learning: Practicing Effective Strategies for Youth Engagement [Sage I]

This unique, interactive workshop will involve EDs/managers and youth in practicing collaborative planning. Using experiential learning, participants will learn new ways to engage and learn from youth.

• Lead Presenter: Chris Shoemaker, AIM Independent Living Center
• Co-Presenter: Kristen Badeau-Haptmann, AIM Independent Living Center 

Opportunities for Funding Transportation through the New Freedom Program [Roebling Library]

This workshop will provide information on funding transportation opportunities for individuals with disabilities and engage the audience in articulating the tools needed to more effectively share resources to bring greater mobility to the disability community.

• Presenter: Tom Vaughan, NYS Department of Transportation

ADA Advocacy with Local Departments of Social Services [Great American Grill]

The workshop will discuss the broad range of accommodations that local DSS’s must provide to clients with disabilities, how to get accommodations for clients, and policy advocacy to obtain better ADA policies and/or compliance from DSS.  It will also discuss current successful collaborative efforts between the National Center for Law and Economic Justice and Independent Living Centers around the state to get improved ADA policies at local DSS’s.

• Presenter:  Cary LaCheen, National Center for Law and Economic Justice

High Expectations of Ourselves and Society: Disability Policy in the 21st Century

• Keynote Speaker: Ari Ne’emen, Autistic Self-Advocacy Network

As we celebrate the 20th anniversary of the ADA and the 35th anniversary of IDEA, it’s appropriate for us to look at the disability community’s needs and priorities today and assess how they have changed for a new generation accustomed to greater rights and privileges than people with disabilities in previous generations. This evening keynote, delivered by National Council on Disability Member and Autistic Self Advocacy Network President Ari Ne’eman, will explore these themes and endeavor to describe a framework for the disability policy of the coming two decades.

The ADA and Olmstead: How Far Have We Come, How Far Do We Have to Go?

• Keynote Speaker: Stephen F. Gold, Disability Rights Attorney [Ferris Ballroom]

Twenty years after the passage of the ADA and eleven years after the Supreme Court’s Olmstead decision, how much progress has been made towards the freedom, independence and full community integration of people with disabilities? Mr. Gold will provide an overview and assessment of where we are and what our community needs to do next to advance the promise for justice of the ADA and Olmstead.

• Conference Presentation

Part II – A Time for Change: Vermont’s Conversion from Sheltered Workshops to Community Employment [Ferris A]

The task of converting sheltered workshops to community-based employment can be a daunting and challenging task. But once people are included in the workforce, there is no turning back. The community is the natural state for all of us, including people with disabilities. Join Bryan Dague as he shows participants how Vermont became the first state to eliminate sheltered workshops. He will discuss the timeline, actions taken, and barriers experienced along their journey to full community employment as a supported service for all!

• Presenter: Dr. Bryan Dague, Center on Disability & Community Inclusion, University of Vermont

Join the Justice for All Action Network [Ferris B]

Too often in the past, the most vocal spokespersons on disability issues have been disability service providers, rather than organizations led by people with disabilities. But increasingly, national disability rights organizations run by people with disabilities ourselves are taking the lead on public policy advocacy in Washington, DC and around the country.  The Justice For All Action Network (JFAAN) was formed to better coordinate and strength our collective efforts.  The Steering Committee of JFAAN is comprised of disability leadership, including NCIL, ADAPT, the American Association of People with Disabilities, Not Dead Yet, the Autistic Self-Advocacy Network and more.  Learn about the national priorities of JFAAN advocacy and how your CIL can become involved in this groundbreaking advocacy and leadership development coalition. 

• Lead Presenter: Diane Coleman, Center for Disability Rights
• Co-Presenter: Bruce Darling, Center for Disability Rights
• Conference Presentation

An Introduction to Social Media for Nonprofits: If You Build It…Will They Come? [Osborne Amphitheatre]

Facebook, Twitter, Blogs, YouTube and Ning. No matter where you look, social media is there. Individuals and nonprofits alike are using emerging technology in day-to-day communications with clients, donors, staff, board, and the community-at-large for various purposes and goals. Our speaker will familiarize you with the social media phenomenon, provide a basic introduction to the most popular tools (including examples of how some nonprofits are utilizing them for marketing, communications, fundraising, and advocacy) and give tips on choosing the right social media tools for your goals and how you can get started using them today.

• Presenter: Valerie Venezia, New York Council of Nonprofits, Inc.

Improving Transportation through Mobility Management Techniques [Sage I]

Improving mobility can improve quality of life. Mobility, as a substitute word for transportation, is required for all to access daily services and activities. While transportation remains a significant challenge for many individuals with disabilities, mobility management techniques can reduce this difficulty through better coordination of services. This presentation will describe approaches to mobility management, various techniques and highlight best practices from around the nation.

• Lead Presenter: Kelly M. Dixon, Center for Transportation Excellence
• Co-Presenter: James J. McLary, Community Transportation Association of America

Maintaining a Quality Home Environment [Fitzroy]

Umbrella relies on membership dues, fundraising and affordable fee-for-services to deliver high quality home maintenance and homemaker services that make a critical difference in an individual’s ability to maintain a quality home environment and life in the community.  The workshop will review the program model, review startup considerations and answer questions on how Independent Living Centers across New York might replicate the model.  

• Lead Presenter: Ron Byrne, Umbrella of the Capital Region Inc.
• Co-Presenter: Michael Peluso, NYS Office of Vocational and Educational Services for Individuals with Disabilities

Access to Health Care for People with Disabilities [Roebling Library]

This session will provide an overview of the rights of people with disabilities to access health care, including an emphasis on self-advocacy skills and collaboration with medical providers. 

• Lead Presenter: Marilyn E. Saviola, Independence Care System, Inc.
• Co-Presenter: Kelly McAnnany, Esq., New York Lawyers for the Public Interest

Strategies to Expand Affordable, Accessible and Integrated Housing for People Leaving Nursing Facilities [Ferris A]

Without access to affordable, accessible and integrated housing, people with disabilities and older adults are often confined to nursing facilities and other institutions against their wishes. This workshop will address emerging strategies for expanding housing programs and resources so people with disabilities and older adults can avoid entering or leave nursing facilities.

• Presenter: Stephen F. Gold, Disability Rights Attorney
• Conference Presentation

ILCs and CBVH: Building Stronger Partnerships/Creating Pathways to Independence [Ferris B]

Three ILC directors and a Commission for the Blind and Visually Handicapped vocational rehabilitation counselor discuss how their partnerships help CBVH identify unmet needs and enhance IL services to the blindness community.

• Lead Presenter: Julie Cardone, NYS Office of Children and Family Services, Commission for the Blind and Visually Handicapped
• Co-Presenter: Doug Hovey, Independent Living, Inc.
• Co-Presenter: Kathleen Madigan, Self Initiated Living Options, Inc.
• Co-Presenter: Ray Ciafardini, Self Initiated Living Options, Inc.
• Co-Presenter: Christina Curry, M.A., Harlem Independent Living Center
• Co-Presenter: Frank Gaydioso

Consumer Directed Personal Assistance Expansion Initiative [Sage II]

The Consumer Directed Personal Assistance Association of New York State (CDPAANYS) was recently awarded a grant by the NYS Department of Health to develop and implement a plan to expand participation in the Consumer Directed Personal Assistance Program (CDPAP) across the state. The project’s activities will include: 1) developing a peer based counseling training curricula; 2) providing peer based programs to assist eligible persons in understanding their role and responsibilities as a CDPAP participant; 3) preparing and disseminating general education and outreach materials to increase awareness of the CDPAP; and 4) developing training curricula for discharge planners, local social services districts, health care professionals and other community based providers. The presenters will discuss the planned implementation of this exciting initiative and what it means for CDPAP in New York State.

• Lead Presenter: Constance Laymon, Consumer Directed Personal Assistance Association of New York State, Inc.
• Co-Presenter: Lew Dubuque, Consumer Directed Personal Assistance Association of New York State, Inc.
• Co-Presenter: Philip McCallion, Center for Excellence in Aging and Community Wellness at the University of Albany

The Long Road to a Fundamental Right [Sage I]

The workshop will include a showing of the documentary, “HAVA in New York: The Long Road to a Fundamental Right.” The presentation and discussion will address the lack of access to voting machines and polling places, an update on the recent passage of polling site access legislation and strategies to ensure its implementation, and advocacy with the US Dept of Justice regarding intervention in NYS.

• Presenter: Brad Williams, New York State Independent Living Council
• Co-Presenter: Helen Benlisa, Catskill Center for Independence
• Co-Presenter: Rima McCoy Center fo Independence of the Disabled, NY

Building Bridges: Making ILCs More Welcoming to the LGBT Community [Fitzroy]

Is your ILC a welcoming and safe space for Lesbian, Gay, Bisexual, and Transgender staff, consumers, and visitors? The Center for Disability Rights will share ways of making your Center more welcoming to all.Presenter: Anita Cameron, Center for Disability RightsPresenter: Helen Benlisa, Catskill Center for Independence

• Presenter: Anita Cameron, Center for Disability Rights
• Conference Presentation

For Youth: How to Help Your CIL Serve You Best [Roebling Library]

Learn more about Independent Living and what it means for you. Explore the leadership qualities that will help you BE THE CHANGE YOU WANT TO SEE IN YOUR CIL (AND COMMUNITY)!

• Lead Presenter: Chris Shoemaker, AIM Independent Living Center
• Co-Presenter: Kristen Badeau-Hauptmann, AIM Independent Living Center

Collaboration: The Promise of Olmstead for Homeless People with Disabilities [Great American Grill]

Independence Care System (ICS) and Barrier Free Living (BFL) operate in New York City separate from one another, but with a shared mission – to support adults with disabilities to live independently in their communities. 

• Lead Presenter: Anna Fay, Independence Care System, Inc.
• Co-Presenter: Paul B. Feuerstein, Barrier Free Living Family of Companies

Recent Developments on the Federal Community Choice Act and Community First Choice [Ferris A]

If enacted, the federal Community Choice Act, a top priority for disability advocates nationwide, will amend Title XIX of the Social Security Act (Medicaid)  to require state Medicaid Plan coverage of community-based attendant services and supports for certain Medicaid-eligible individuals. This workshop will provide an overview of recent advocacy actions in support of the bill. In addition, the presentation will address the Community First Choice Option, recently incorporated into the passage of federal healthcare reform, which advances Medicaid home and community-based services and supports and lays the foundation for enactment of the Community Choice Act.

• Lead Presenter: Bruce Darling, Center for Disability Rights
• Co-Presenter: Diane Coleman, Center for Disability Rights
• Conference Handout 1
• Conference Handout 2
• Conference Handout 3

Including the Autistic Community in the Independent Living Movement [Ferris B]

While the Independent Living Movement has been a force of significant good for people with disabilities of a wide variety of different types, there remain underserved populations within Independent Living who would benefit from the consumer-controlled services Centers for Independent Living are uniquely situated to provide. One of these groups is adults on the autism spectrum. This session is intended as an informal discussion for consumers and self-advocates, CIL employees and others with ASAN President Ari Ne’eman for the purpose of starting a dialog on how to increase representation of Autistic adults in the Independent Living movement. All interested individuals are invited.

• Presenter: Ari Ne’eman, Autistic Self Advocacy Network

Inside Out: From Institution to Independence [Sage II]

This workshop will include two presentations intended to provide ILC staff and advocates with technical assistance on assisting people with disabilities to leave institutions.  Presentations will address how to work with institutional staff and structures, with the goal of increasing the presence of IL staff and the IL philosophy in institutions.  Participants will also learn about tools and techniques to help them begin or improve a program for deinstitutionalization, including strategies for empowering the individual, making transition plans, increasing advocacy efforts, ILS training, understanding of legal systems, systems change, and more.  

• Presenter: Marcie Kelly, Western New York Independent Living
• Presenter: Darlene Dickinson, Southern Tier Independence Center
• Presenter: Susan Link, Southern Tier Independence Center

Disability Awareness Education in Schools [Sage I]

This workshop will include two presentations focused on school-based education programs designed to promote understanding of accommodations, accessibility and independence for people with disabilities.  Participants will hear about the unique partnership of Catskill Center for Independence and Riverside Elementary School, and ways to create a similar program in their communities.  Workshop attendees will also learn about pending legislation to require disability education in schools and review disability history sample lesson plans.

• Presenter: Donald Wyckoff, Catskill Center for Independence
• Presenter: Catherine Herrick, People, Inc.

NCIL Advocacy and Legislative Priorities [Osborne Amphitheatre]

The National Council on Independent Living (NCIL) will present a workshop on its programs and current legislative priorities. NCIL staff will discuss its role in the Independent Living Movement, in addition to how the organization operates on a national level. Some of the topics that will be addressed include the reauthorization of the Rehabilitation Act, and the proposed establishment of a national Independent Living Administration. NCIL will also discuss its Legislative Priority Survey for members, and will give an opportunity for workshop participants to provide input as to what these priorities should be during the 112th Congress.

• Presenter:  Austin Walker, The National Council on Independent Living

Charting a Course to Wellness through Access and Integration [Roebling Library]

The NYS Departments of Health, Environmental Conservation and the Office of Mental Health share programs to promote health, quality of life, access and integration for persons of all abilities.

• Lead Presenter: Theresa Paeglow, NYS Department of Health (DOH), Disability and Health Program
• Co-Presenter: Danielle MacFee, NYS Department of Health
• Co-Presenter: Carole Fraser, NYS Department of Environmental Conservation
• Co-Presenter: Teresa Arman, NYS Office of Mental Health
• Conference Presentation

Employment, Independent Living & Employment Networks: Emerging Partnerships Between Independent Living Centers, VESID and the Social Security Administration [Great American Grill]

The workshop will review the opportunity for centers to contract with the Social Security Administration and perform as an Employment Network (EN).  The pros and cons of participating as an EN and a range of implementation considerations will be discussed, including incentives for consumer participation, the SSA payment process and how VESID’s services interface with EN and ILC services.

• Lead Presenter: Michael Pelu

Taking Action for Independence: Confrontation and Controversy

September 8-10, 2008
The Desmond Hotel and Conference Center, Albany, NY

The New York Association on Independent Living (NYAIL) proudly presents the 2006 Conference and Disability Caucus. More than 300 people with disabilities and other participants will be taking action for independence! The conference presents a unique opportunity for education and collaboration around the issues that must be addressed in order to change systems and change lives!

Workshop Presentations will include:

• From Rhetoric to Results…Transforming the Independent Living Model
• The Best in Transition Services for School Age Youth with Disabilities
• Identifying and Overcoming Systemic Barriers to Nursing Facility Diversion
• Empowering Young People and Increasing Youth Involvement
• Building an Effective Grassroots Advocacy Campaign
• Cultural Diversity in Independent Living
• Peer Mentoring and Supports in Employment
• Independence Care System: A Model for Nursing Home Diversion
• Accomplishing Systems Change through Litigation
• Medicaid Managed Care: Advocating for Access
• New York State Plan for Independent Living 2008-2010, Public Comment
• How to File a Voting Discrimination Complaint
• Using the Emerging Disability Policy Framework to Support Community-Based Systems Change Initiatives
• Systems Change in Mental Health and Long Term Care: Related Issues of Choice and Force
• Practicing Sound Financial Risk Management: An Overview of Fraud Prevention Tips for Nonprofits

Who Should Attend

This conference will provide valuable information to people with disabilities and their families, board members and staff of Independent Living Centers and other disability rights organizations, vocational rehabilitation professionals, legislators, government agency representatives, and local business professionals.

Robert "Bobby" Silverstein

A behind-the-scenes architect of the landmark Americans with Disabilities Act (ADA), Robert"Bobby" Silverstein has devoted a lifetime to disability rights. Bobby served for ten years as principal advisor to Senator Tom Harkin, chief sponsor of the ADA, and today he directs the Center for the Study and Advancement of Disability Policy. Bobby will set the tone for the three-day conference by sharing strategies from his latest book: A Congressional Insider's View: How to Be an Effective Disability Policy Change Agent.

James J. Weisman

For the past 27 years, Jim Weisman has been General Counsel for the Eastern Paralyzed Veterans Association, now called United Spinal Association. He was a key negotiator with members of Congress in drafting and supporting the passage of the ADA and was integral to the development of the transportation provisions of the ADA through litigation in New York City and Philadelphia. Jim was a founding member of the Board of Directors of the American Association of People with Disabilities and in 2003 was elected Chairman of the Board. Jim is widely recognized for his many contributions to the disability rights movement.

Candidates Reception

Just one week following the conference, New Yorkers will go to the polls. NYAIL and the League of Women Voters of New York State are co-sponsoring a Candidates Reception in conjunction with the conference, on October 31 from 7:30-9:00 pm. This is your opportunity to hear from candidates for statewide office, including U.S. Senate, Governor, and Attorney General. Each candidate will be asked to provide written answers to a questionnaire regarding policy issues that impact people with disabilities in advance of the Candidates Reception. Candidates qualified to stand for the statewide offices listed above who have been selected by their parties will be invited to participate.

Disability Caucus

The statewide Disability Caucus will take place in conjunction with the NYAIL conference. The Disability Caucus, organized in collaboration with the New York State Independent Living Council, provides an opportunity for a wide variety of stakeholders to identify and prioritize issues important to people with disabilities. The caucus will include information and debate sessions facilitated by policy experts in the areas of housing, health care, employment, transportation, election reform, and inclusive education. Caucus sessions on each of these issues will meet on days one and two of the conference. On day three, all participants will meet to finalize a comprehensive, unified statewide disability action agenda for 2007. This is your opportunity to shape disability policy advocacy for the future so plan to attend!