ITEM logo

The Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition was formed to raise awareness and build support for policies that will enhance access to assistive devices, technologies, and related services for people with disabilities and chronic conditions. The coalition is broad-based including disability and aging organizations as well as health and provider associations. VSA recently joined the coalition to support its advocacy for Medicare coverage of low vision aids and devices. ITEM is developing strategies to convince the Centers for Medicare and Medicaid Services (CMS) to rescind its existing “low vision aid exclusion which is based on the exemption of coverage for eyeglasses.” Because of this restrictive interpretation of the “eyeglass exemption” in the Medicare statute, Medicare beneficiaries are often unable to access critical assistive technologies that have lenses such as high-power magnifiers and other visual aids. Yet, these tools are often essential for individuals with low vision to read prescriptions, financial documents, mail, recipes, and other important health-related materials. We’ll keep you posted on this important effort. Information about the ITEM Coalition.
 
VSA has also endorsed the Medicare Demonstration of Coverage for Low Vision Devices Act, H.R.4129. The bill, sponsored by Rep. Maloney (D-NY) and Bilirakis (R-FL), would evaluate the feasibility and cost of providing Medicare coverage for low vision technologies. The project would last for five years and a prescription from an ophthalmologist or optometrist would be required.

Today is Monday, April 27, 2020, which would have been our first full day together in Albuquerque, New Mexico for our CEO-Focused Summit. I was feeling sentimental over the weekend – grieving for what might have been.

View the photos from the Atlanta conference

But I awoke today in Winter Park, FL to what I consider to be THE perfect morning. Low 60’s, sunny blue skies, low humidity, a gentle breeze and birds singing. Beautiful and peaceful. I drank my Nespresso coffee while sitting on my back patio, watched the squirrels eating a few seeds that fell from the birdfeeder in the backyard and gave thanks for the opportunity to slow down and breathe. Inhale – exhale. I can hear my Pilates instructor’s voice in my head: breathe in through your nose . . . and out through your mouth. . .  (I miss her too.) 

There has not been enough of these moments during work hours over the last few weeks – we have been busier than ever. But the mornings and evenings – and the weekends – have been lovely. Lovelier than usual. Until recently, some of that was lost on me because I was preoccupied with worrying about things that have not yet happened. 

I have always been a purpose-filled person and for me that meant being fixed on the future – what comes next. What do I need to be doing to assure that next thing happens? I like to be in control – or feel like I was. And anxiety for me came primarily from feeling I had lost that control. So admittedly, I have been anxious for months. 

This pandemic experience has removed much of that control I used to think I had. I am reminded that the only thing I really have control over are my thoughts, words and actions. And it is much more difficult to predict the future in the current economy.  So, what can I do?  

First, I can breathe; express and feel grateful for the many things that are genuinely good in my life.  Secondly, I can trade fear for curiosity and get excited about doing things differently. Many of the things we are doing now out of necessity are ideas we explored and discussed over many years but may never have moved forward – until we had no other choice. I actually like change – there are so many opportunities for that right now. Thirdly, I can choose to remain positive and help my colleagues, friends and family do the same.  We will survive. We have the ability to figure all of this out. I know we will. 

Breathe in through your nose – long and deep – and out through your mouth. And next year, in Albuquerque! 

Author: Paul Schroeder, April 8, 2020

Across the US, businesses, and agencies, and the communities and individuals they serve are struggling in countless ways to maintain well-being – physical, mental and economic. And, our political leaders are also struggling, with limited resources and levers to provide assistance and guidance. Recently enacted legislation has certainly helped and most agree that more action will be needed. In light of these unprecedented times, making our voices heard, on behalf of those we serve, those we employ and those we care for is more challenging than ever. Over the next several issues of Enews, we will try to keep you informed of developments and action needed regarding policy advocacy and provide resources here and on the website. Read on to see current threats to education, accessibility, and voting rights.

Threats to Education

As many are now aware, the recently enacted CARES Act included language directing the U.S. Secretary of Education, Betsy Devos, to report to Congress within 30 days to recommend any proposed waivers of rights and requirements outlined in the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act. It is obvious that flexibility may be needed concerning direct services and even materials production and distribution during this period of closures. However, the strength of IDEA is its individualized planning and services which allows parents and schools TO WORK TOGETHER.

Congress would likely have to approve any requested waiver of requirements and rights under IDEA or 504, but Congress needs to hear from those of us who have the responsibility to defend opportunities and uphold the rights of individuals we serve and support. To follow this issue, we recommend that you check with the Council of Parent Attorneys and Advocates (COPAA). In addition, VSA members ACB, AER, and AFB are also carefully monitoring this evolving situation and will doubtless have up-to-date information.

Protecting the Right to Vote

Likely many of you live in states that have delayed the political primary. As I write this, Wisconsin is going ahead with its primary election, despite serious concerns about the health of voters and staff at physical polling sites. Many states have increased mail-in or absentee voting for upcoming primaries (and other special elections). By next November, we may be again facing social distancing. Calls for increased mail-in voting will increase, and many in Congress have attempted to push legislation to provide support to states for this purpose. Without commenting on the politics of absentee voting, it is imperative that we make clear that individuals who are blind or low vision have the right to cast an independent and secure vote. ACB, and other advocacy organizations, are leading efforts to push Congress to ensure support for accessible absentee voting measures.

Let us know the policy issues on which you would like VSA or your colleagues to take action. And, we’ll be on the lookout for new legislative or regulatory efforts related to the COVID-19 pandemic.

How to contact your elected members of Congress:

Contact Info for Your Senators is here: https://www.senate.gov/general/contact_information/senators_cfm.cfm

Contact Info for Your House Member is here: https://www.house.gov/representatives/find-your-representative

And, contact Info for Your Governor is here: https://www.usa.gov/state-governor

Lou present with the Lifetime Achievement Award by lee Nasehi and John Mitchell during the Atlanta conferences
Lou present with the Lifetime Achievement Award by lee Nasehi and John Mitchell during the Atlanta conferences

Lou was present with the Lifetime Achievement Award at the VisionServe 2019 conference in Atlanta

Lou Moneymaker, former President of BOSMA Enterprises

Lou Moneymaker has dedicated his life to service. For 50 years, Lou has worked to create equal opportunities and independence for people who are blind or visually impaired. His passion is evidenced by his work and service to many organizations to empower people experiencing vision loss.

His career began at the Indiana School for the Blind and Visually Impaired (ISBVI) where he was a teacher and a coach. Over his tenure, he also served in several leadership positions. As a track and field and wrestling coach, he fostered students’ abilities and their confidence until they believed they could accomplish anything they put their minds to. After 33 years, Lou retired from education.

In 2001, a career change was presented to Lou. He left ISBVI but did not leave his service to people who are blind or visually impaired. He became the president and CEO of Bosma Enterprises. Under his leadership, Bosma has undergone explosive growth from a $2 million to a $70 million company. To date, Bosma is Indiana’s largest employer of people who are blind or visually impaired. Under Lou’s direction, the company positioned itself as a national leader in the field of employment of people with vision loss by becoming the first not-for-profit in the country to build a fully-integrated, end-to-end business system on the Salesforce platform that is accessible to a person with vision loss. The new system allows a person who is blind to work in any position throughout the company and opens opportunities that may not have been available before.

Improving the Workplace

Additionally, under Lou’s leadership, Bosma Enterprises moved into a brand-new state-of-the-art headquarters that was designed to be accessible. His leadership has also allowed for the growth of Bosma’s programs and the development of the Center of Visionary Solutions for the Blind, a new facility that increases space for programs and expands training of people who are blind. His entrepreneurial spirit has permeated the organization which has challenged every employee to look for new ways to grow the business and to further Bosma’s mission to create opportunities for people who are blind or visually impaired.

His commitment to serving others does not stop at his work. In 1976, Lou, along with three other leaders saw an opportunity to create more opportunities for athletes who were blind. During the 1976 Olympics for the Disabled (renamed the Paralympics in 1988), the first to include athletes who were blind, this small group noticed nearly every other participating country had an organization for the development of athletes with vision loss. This group went on to found the United States Association of Blind Athletes (USABA). Lou was named the first vice president of the USABA and continues to serve and support the organization in many ways.

Lou Moneymaker’s devotion to students, athletes and employees have been critical to dispel the stereotypes surrounding people with disabilities. Lou has brought an innovative and entrepreneurial approach to creating opportunities for people who are blind or visually impaired.

David Ekin

David Ekin shaking hands with John Mitchell as he receives the Lifetime Achievement Award
David Ekin shaking hands with John Mitchell as he receives the Lifetime Achievement Award

Dave was the President of the Board of the National Council of Private Agencies for the Blind and Visually Impaired (NCPABVI) from 2001-2004 . 

Back then NCPABVI was a loosy-goosy volunteer led organization, so whoever was President of the Board also was a full-time Executive Director of a blindness organization.  At the first meeting he presided over, he told us that he believed NCPABVI’s members could be the leaders of the field because together we held the power and knowledge to influence policy, improve services, and communicate with the public.  Dave recommended that the members participate in a strategic planning process, which they agreed to.  It took place at the next 2 or 3 NCPABVI meetings.  Dave was absolutely phenomenal during the process as it was important to him that every single member was given a voice. 

Dave made sure that those who could afford to come to meetings weren’t the only voices heard and the only opinions considered.  He spent considerable time connecting and talking to everyone – small and large organizational leaders – those at meetings and those who had never attended a meeting.  The overwhelming outcome of the planning process was that members knew that NCPABVI needed to professionalize – to apply for 501(c)(3) status, hire an executive director, and set up an office.  Dues back then were $150 (give or take a few bucks) for every member no matter the size of the organization.  $150 from 50 members wasn’t going to pay for staff or an office, so Dave was very thoughtful and inclusive (once again) in trying to figure out how much dues should be.  After much discussion by a committee and with members, Dave proposed raising dues big time and that dues be paid upon budget size.  Every member was going to see a dues increase, but the middle and large sized agencies were going to see the biggest increase – from $150/annually to upwards of $2,000/annually. Not one member dropped their membership!   In addition, Dave asked every member to consider contributing to a start-up fund so the administrative person could be hired right away.  He started the fund with $1,000, and 35 (plus or minus) additional members contributed $1,000!  With money in hand to hire someone, Dave then offered to host NCPABVI’s office at his agency’s building in St. Louis, donating furniture, computer, telephone, and access to the copier, FAX machine and his staff.  Dave is the reason NCPAB

David Ekin delivering a speech after receiving the Lifetime Achievement Award
David Ekin delivering a speech after receiving the Lifetime Achievement Award

VI professionalized and grew, and became the VisionServe Alliance we know today!  And his in-kind donation of office space is why VisionServe Alliance is headquartered in St. Louis.  As they say .. And the rest is history.  

Dave’s national influence at AER, creating ACVREP, and professionalizing NCPABVI into VisionServe Alliance are all important reasons why David is so deserving of VisionServe’s Lifetime Achievement Award.  And also, how he took his agency the St. Louis Society for the Blind from a small little thing to a multi-million-dollar budget and one of the leading Low Vision Clinics in the country! 

AER- As the Treasurer Dave, negotiated with AFB to make JVIB an AER member benefit.

It was the AER Board that “invented” ACVREP – at the time, AER had a “certification” process that was so simple that it didn’t really verify expertise or knowledge. 

Dave was a big part of knowing that to make the World aware of our vision professionals and the services we provide, that there had to be a way to assure that World that vision rehabilitation therapists, O&Mers, and low vision therapists were deserving of respect and that was to test their knowledge.  ACREP was invented. 

Successes at the St. Louis Society for the Blind. 

. David has served on the Boards of MacMurray College, the National Vision Rehabilitation Network, the Academy for Certification of Vision Rehabilitation and Education Professionals, the National Accreditation Council for Agencies Serving the Blind and Visually Impaired, the Association for Education & Rehabilitation of the Blind and Visually Impaired, and as President of the VisionServe Alliance.

For 25 years, David Ekin led for this Society and for the blind and visually impaired individuals it serves. From 1994, when he originally was recruited, to the present, the Society has increased its services to its clients from $400,000 per year to over $2,000,000 per year. The Society now serves more than 1500 individuals with low-vision assistance through the Drews Low Vision Clinic, rehabilitation, mobility, technology, and other training that clients can access.

David’s commitment to the visually challenged began almost as soon as he left The Brown School of Social Work at Washington University in 1984. He immediately began his career at the Illinois School for the Visually Impaired while serving as an instructor in Social Work at MacMurray College. After briefly moving to Los Angeles to work for the Foundation for the Junior Blind, he was recruited back to St Louis to become the CEO of the Delta Gamma Center where he was able to improve the fiscal health of the organization and to incorporate community members into the governance structure.

In 1994, our Society for the Blind and Visually Impaired lured him away from Delta Gamma to become the tenth CEO of our organization and has now become our longest-serving director. In the past quarter-century, he has implemented school-age services to area school districts, developed a relationship with the university of Missouri St Louis School of Optometry to expand Low Vision Clinic services, overseen development and implantation of the first and subsequent Strategic Plans, implemented outcome measures for programs and services, hired the first Development Director to address the need for more diverse funding sources, assisted in implementation of a more robust grant writing program that has garnered increased funding for Society services, worked with the Board of Directors to implement a term limits policy, improved Board recruitment, and reduced the dollar amount used from investments for annual operating costs by finding other funding sources.

But it will be his relationships with all levels of partners in this enterprise that will be hard to duplicate. He has established rapport with clients, staff, Board, and donors – a difficult, if not impossible feat. His responsiveness to multiple challenges, from leaking rooves to unexpected bequests, from downturns in the market and reduction in the endowment to loss of personnel has been upbeat, friendly, and optimistic with solutions found. All for the sake of helping those with visual impairments!

Rod Haneline receiving the Excellence in Managerial Leadership Award from John Mitchell, Sue Daniels , and Lee Nasehi at the 2019 Atlanta conference.d
Rod Haneline receiving the Excellence in Managerial Leadership Award from John Mitchell, Sue Daniels , and Lee Nasehi at the 2019 Atlanta conference.

Nominated by Sue Daniels, Leader Dogs for the Blind

“It is with great pleasure that we, the chief executive officers of Leader Dogs for the Blind and Guiding Eyes for the Blind, recommend Rod M. Haneline, vice president and chief programs and services officer, of Leader Dogs for the Blind for a 2019 VisionServe Alliance Excellence in Leadership Award. Mr. Haneline’s four decade career at Leader Dog is marked with accomplishment at every level – including service to the local, state, national, and international community of practitioners and organizations working on behalf of people who are blind or visually impaired. He has proven to be an excellent teacher, mentor, and thought leader for the community of service providers working on behalf of those with visual and/or hearing impairments.

Mr. Haneline came to Leader Dog after service in the United States Air Force (USAF) as a canine handler with
Military Working Dogs (MWD). He worked diligently to obtain both his Guide Dog Mobility Instructor (GDMI) and Certified Orientation and Mobility Specialist (COMS) credentials. It was his unique dual-training and understanding of the skills required to be a successful guide dog user that helped him design, develop, and implement an accelerated orientation and mobility (O&M) program at Leader Dog in 2002. Combining O&M with guide dog training in the cadre of programs and services available set Leader Dog apart on an international stage and earned industry recognition with the 2012 Access Award from the American Foundation for the Blind (AFB). His ability to connect the essential orientation and mobility skills with guide dog work has allowed him to simultaneously navigate both arenas for the past two decades, where he has also connected research and practice. A highly adept presenter and collaborator, even colleagues like Steve La Grow, Professor in the School of Health and Social Services at Massey University take notice, “One of the truly unique things about Rod is that he is one of the very few senior administrators from the blindness field who regularly attends O&M and guide dog conferences, and when doing so, directly challenges those working in professional preparation programs to ensure that their programs are up to date and relevant to those who are actively conducting research to answer the questions of practical importance to those who are delivering services.”

Through Mr. Haneline’s leadership, and because of his visionary contributions to our organization, Leader Dog addresses both diverse and traditionally underserved clients. We were the first provider of services to clients who are Deaf-Blind in the Western Hemisphere and remain one of only two U.S.-based guide dog organizations offering GPS-aided wayfinding because of his vision. Leader Dog has advanced the spectrum of services available to people who are blind or visually impaired by utilizing Haneline’s passion and continuous exploration of emerging technologies. As noted by Dr. William M. Penrod, Associate Professor of Special Education at Northern Illinois University, bridging the gap between service needs and service delivery has always been Mr. Haneline’s strength, “One very important accomplishment that has always struck me as perhaps his most important contribution to the field. Historically, the most prominent dog guide schools did not adequately address the needs of those persons who are blind and multiply disabled, those that were Deaf-Blind and those persons who were adult, interested in acquiring a dog guide, but had not been taught the necessary requisite skills in orientation and mobility to make them eligible for a dog guide.”

Mr. Haneline greatly expanded his leadership role by developing and increasing opportunities for aspiring professionals in orientation and mobility and veterinary care. His vision for a fully funded internship was realized in 2011 when the Edward T. and Ellen K. Dryer Orientation and Mobility Internship Academy was endowed. Since then, 22 students have completed a 14-week paid internship, inclusive of room and board. Seventeen of the former interns are now professionals accredited and working at VisionServe Alliance members or partners, including Miguel Reyes, an orientation and mobility specialist, with the Blind & Vision
Rehabilitation Services of Pittsburgh, who participated in the Dryer Internship and learned directly from Rod Haneline and his team during the delivery of accelerated orientation and mobility services. As a cosigner, he supports the innovative approaches led by Haneline and dedication to client-centered service delivery.

Mr. Haneline also led the redesign of the apprenticeship program at Leader Dog, now in its fourth update, which will collaborate with Guide Dogs for the Blind to fill a critical human resource need in the field. Utilizing E-learning modules, accessible anywhere in the world by apprentices, it will set a new industry standard. Mr. Haneline also observed that GDMIs leave the industry because upward mobility and leadership roles are not readily available, so he created Senior-level and Master-level instructor opportunities. Senior and Master distinctions, along with a financial incentive upon completion, have helped increase retention of these team members and ensure 100% of apprentice instructors, and 98% of GDMIs are satisfied with employment at Leader Dog. Through his guidance, Leader Dog continues to operate one of the most respected veterinary externships hosting 10-15 externs annually during a three-week rotation. Externs have gone on to work at service dog organizations, with military and police dogs, at the USDA, and are in private practice.

Our nomination of Rod Haneline rests on the legacy of contributions he’s made, which demonstrate local, national, and international impact. Mr. Haneline will retire from Leader Dogs for the Blind effective July 2020, and his contributions are nothing short of remarkable. Resting at the heart of our industry is the ability to meet the client where they are. No leader in our field perhaps better understands this than Rod Haneline. We are humbled by his ability to sync and view individually O&M and guide dog programming, so that all clients may travel, and live, more independently. His efforts to innovatively program for new, and developing client needs, like using GPS, envisioning a devoted Deaf-Blind guide dog training, and emerging groups – like older clients, urban travelers, and college-bound students, have provided a roadmap for the industry. However, when we look forward, it is his leadership across a variety of fields, among the next generation of professionals, that sets him apart from his peers. “

Sue Daniels

President and CEO

Leader Dogs for the Blind

Mike Gilliam accepting the Excellence in Leadership Award from Lee Nasehi, Erika Petach,and John Mitchell at the 2019 Atlanta conference.
Mike Gilliam accepting the Excellence in Leadership Award from Lee Nasehi, Erika Petach,and John Mitchell at the 2019 Atlanta conference.

Presented by Erika Petach, BVRS- Pittsburgh

“Not only has Mike achieved tremendous success for the San Antonio Lighthouse for the Blind (SALB) during his tenure as CEO. He has also been a significant contributor to the field and a mentor for new leadership.
In the 14 years that Mike has served as CEO of SALB he has created an environment where individuals with vision loss love to work. His organization has won the “best places to work” award seven times from several different local and state-wide journals and magazines. He creates an environment where all employees feel valued and equal. He regularly throws parties for his employees, holds contests, and brings in meals to show his appreciation.

Additionally, the Lighthouse has grown significantly during his tenure, winning the “Fastest growing Lighthouse in the Nation” award from National Industries for the Blind. When Mike first came to SALB they were serving just over 1 ,000 people per year and now they are serving over 9,500 individuals with vision loss per year. He has also hired over 500 individuals with vision impairments in his tenure at SALB.
Mike has also contributed significantly to the field through his involvement on the boards of National Industries for the Blind, the National Association for the Employment of People Who are Blind, and on SALB’s board prior to becoming its Chief Executive Officer. Mike has chaired numerous committees and is always willing to help on a sub-committee when a problem arises. He has led a committee to work on reciprocal purchasing between National Industries for the Blind and Source America. His focus is to increase internal purchasing that will create additional jobs for people who are blind and to show outsiders that organizations “practice what they preach” by purchasing from each other.
Additionally, he created a group of nonprofit organizations in San Antonio that work together to address issues in Texas using a “strength in numbers” approach.

Improve the lives of persons with vision loss and related disabilities by teaching independence and self-advocacy
Mike is friendly to everyone and is always willing to help someone who is new to learn the ropes. He is always sharing practices from his organization that can help other agencies to create new opportunities for those they serve. He is passionate about his work and this is evidenced in everything he does.
It is our pleasure to nominate Mike Gilliam for the Excellence in Leadership award.”

Sharon Giovinazzo accepting the Roxann Mayros Champions Award  from Lee Nasehi and Roxann Mayros at the 2019 Atlanta Conference
Sharon Giovinazzo accepting the Roxann Mayros Champions Award from Lee Nasehi and Roxann Mayros at the 2019 Atlanta Conference

Presented by Lauren Branch, NewView Oklahoma

“I respectfully nominate Sharon Giovinazzo for this year’s Roxanne Mayros Champion Award.  I believe Sharon embodies the spirit of this award.  I have known Sharon since her days as an employee of Central Association for the Blind and Visually Impaired in Utica, New York and have watched the significant impact she has made across our field over the years.  There is no greater evidence of this than what she has accomplished in her current position as CEO of World Services for the Blind.

Sharon was hired as the CEO at a time when the viability of the organization was in question due to both financial issues and lack of stable leadership.  Sharon was the 5th CEO in a period of 4 years and took the position knowing that she was going to need to dig in and turn the organization around quickly or the organization would not survive.  Sharon recognized that failure was not an option and has worked to build a solid team, rebuilding WSB’s name and reputation as a leader in blindness services. She has developed national relationships that have allowed WSB to develop and adapt programs to better meet the needs of their clients, customers, and community. 

Today, 3 years later, WSB is growing and thriving under Sharon’s leadership.  Not only have they revamped their programs, developed new revenue streams, and increased services for people who are blind, they are also embarking on a capital campaign to renovate their facilities and are well on their way to meeting their goal.

In addition, Sharon has proactively worked to bring their programs to other areas of the country via collaborative relationships with other agencies such as NewView.  She has been willing to share their expertise and programming so that we can build and enhance our programs here in Oklahoma.  She is creative and innovative and continues to focus her efforts on doing everything in her power to improve the lives of all people who are blind one person at a time.”

Lauren Branch, President/CEO

NewView Oklahoma

Present by Sassy Outwater-Wright, MAB Community Services

(Left) Lee Nasehi, Bryan Bashin, Sassy Outwater-Wright, and John Mitchell (right) posing with Bryans award at the Atlanta conference
(Left) Lee Nasehi, Bryan Bashin, Sassy Outwater-Wright, and John Mitchell (right) presenting Bryan Bashin with the Excellence in Leadership Award at the Atlanta conference 2019.

“The leaders who effect the most transformative change are those who, by their example, support the work of those around them, encourage exploration, and invite in diverse voices and topics of inclusion before, not after, decisions are made.

I am a woman. I am a blind woman who is neurodivergent. I am an LGBTQ person. I grew up in an Arab-American household as a Muslim-American. I am a survivor of domestic violence and sexual assault. I wear all these labels concurrently and many others. I sit in a position of executive leadership at my organization. I am there because my board and my superiors believed in me and believed that lived experience and intersectionality are powerful leadership qualities for better serving our constituents. I got to my position because I watched and learned from another blind leader and drew strength and courage from watching his organization in action.

How often do we get to look up to the corner offices and see those like us, with all their identifiers, reflecting who we are and the barriers we face, living intersectionality alongside us every day? I spent a long time fearing that my lived experience as many intersecting things would keep me from leadership or wouldn’t make me into a good leader. I’d been through too much, I’d tell myself, intersectionality wasn’t a required skill on a cover letter or job application. Then I read about the programs and services at the lighthouse for the Blind of San Francisco, and I changed my mind, and saw myself as a leader, because someone far away who didn’t know me put in the work necessary to ensure people like me were included in their programs.

Bryan Bashin has led the Lighthouse for the blind of San Francisco California for the past nine years. Those VSA members who attended the New Orleans conference two years ago may remember pausing as a group to grieve with the absent Mr. Bashin as he led his organization through a tragic time: Enchanted Hills Camp, an iconic place in the blind community, burned in the California wildfires. The Lighthouse, under Bryan’s leadership,  has since begun to rebuild Enchanted Hills, ensuring that the new camp buildings are accessible to and inclusive of as many people as possible who need a beautiful, natural place to learn and retreat. In addition to this, Bryan has worked to ensure inclusion at every level of the lighthouse:

  • ind leadership  at lighthouse over  his  tenure has increased measurably.  Not only half the Board of Directors, but half of the c-suite are blind.  There are blind people working in nontraditional jobs, such as HR, janitor, and Development.
  • Largest-ever contingent of more than 100 in San Francisco’s Pride Parade
  • Camp counselors went from 17 sighted and 3 blind to 17 blind and 3 sighted.
  • No NIB employee earns less than $16.50 per hour to start.
  • Lighthouse serves  undocumented blind people with no questions asked.
  • The Holman Prize has been awarded to blind people on four continents of all backgrounds.

In the past 25 years, it is safe to say that if you are a blind person on this planet, you have been affected by Bryan’s work, commitment to this community, and leadership within it. Bryan’s is a quiet leadership committed to the civil and human rights of blind and visually impaired people all over the globe. He works most often behind the scenes in a style of leadership that supports those working alongside him; he brings people forward who do not otherwise have a voice in public policy, and brings organizations and people together to break down barriers and confront stigmas that have kept minority groups within the blindness community away from services they need.

I did not know Bryan personally when I interviewed to become the executive director of my organization. I only knew that Bryan’s org was one of the few–if not the only organization at that time in our community–creating programs and services to include sexual assault survivors, LGBTQ+ individuals,  and many others. I didn’t receive services from the Lighthouse, but knowing the work was being done was enough to give me hope. The Lighthouse’s programming gave me the courage to believe I had a place and a voice in the blindness community, that I had value and intrinsic worth to this community, and that I could do a lot to change things, and build the inclusive world I want to be a part of in my daily life as a director and as a person with disabilities. Knowing an organization had committed to serving people like me was enough to push me to step forward, say loudly to my company that I was qualified and could do this job, and they chose me to lead.

A good leader inspires by example and nothing else. Bryan’s commitment to letting his programs and the services of his organization speak for themselves sets a loud and clear directive to all of us leaders: we need to commit to this community as a whole, see more lived experience and intersectionality in leadership, and see more inclusive programming and services wherever we look. My hope is that Bryan’s work reminds all of us to ask who is not at our table and may that goad us each into building the programs and policies necessary to put them there and let them lead.”

Early referral to vision rehabilitation for low vision patients is now the American Academy of Ophthalmology standard of care. This short video, introduced by David W. Parke II, M.D., AAO CEO, features prominent academia ophthalmologists and experts on vision rehabilitation. The video helps ophthalmologists to better understand the impact of vision loss and refer patients to trained professionals who can help maximize their quality of life and make the most of their residual vision.


Copyright Community Services for Vision Rehabilitation. All Rights Reserved

Roxann Mayros headshotBy Roxann Mayros, President, VisionServe Alliance

There is strength in numbers.  The scope and diversity of services to people with vision loss are keys to VisionServe Alliance’s strength. The features that distinguish your Alliance – your spectrum of talents, missions, and nationwide view – are much of what make VisionServe Alliance’s members an unparalleled force for progress and social cohesion. Just as important is the characteristic that VisionServe Alliance members share a fundamental, collective commitment to the public good, to generosity and voluntary effort.

Yet, for the things you have in common, for your unifying values and common needs, it’s essential to have an organization that stands for the whole.   

Together … You Speak With One Voice

There is strength in collective expertise.  By weaving your various efforts into a strong and consistent commitment, VisionServe Alliance members help other members to adapt, innovate, and excel. Most important, your coalition improves lives. Through your membership, members hear their individual voices amplified nationally. Each of you benefit from the collective expertise and knowledge of colleagues from around the United States. Through VisionServe Alliance, leaders providing services to people with vision loss collaborate to find creative solutions to some of this country’s biggest challenges.

Together … You Improve Lives

There is strength in coalition.  VisionServe Alliance members enrich lives and communities throughout the United States and now in Canada in diverse ways such as teaching independent travel with white canes or guide dogs, preparing toddlers for school, opening access to jobs and careers, teaching skills for independent living, teaching the use of and providing access to Braille, using magnification to enhance residual vision, advocating on behalf of people with vision loss, assuring high quality standards and certifications exist, and providing access to equality in education.

Drawing such a large and varied community together, envisioning your collective potential, and organizing your vast network of talent and resources is crucial to the success of communities everywhere.

Together … You Are More Effective

There is success through experience.  Through VisionServe Alliance, members share vital expertise that enriches and enlarges their work.  Assembling information from a wealth of practical and technical resources, allows you to spotlight successful approaches to accountability, effectiveness, communications, and best practices in services to people with vision loss or blindness. By sharing expertise, each of you help organizations of all types respond to problems and enrich lives.

Together … You Are Smarter

There is power in knowledge.  Your attendance at twice annual conferences provides a premier opportunity to explore pressing issues from around the country and to network with top leaders from throughout the country. The connections that result, which often lead to continuing partnerships, create new ways of thinking and practical plans of action for organizations and for communities. By working together, VisionServe Alliance members extend their impact far beyond any one service system or organization!

By Roxann Mayros, President & CEO, VisionServe Alliance

Roxann Mayros headshot

In 2018, VisionServe Alliance saw 8 of its members retire, and there are already 5 who have announced their intent to retire in 2019. Over the years, I combined the following information from various sources and have given it to specific members.  With the number of members who recently retired or have announced their intent, I thought this would be good information for all members to read and keep handy … just in case you are the next to announce your retirement. 

Please Note: This document was created from several sources over several years. I thank those authors from whom I pulled information, and apologize for not being able to give credit. 

  1. How do we define success?  It’s hard to overstate the importance of defining success.  To define success, you don’t need an exhaustive up-to-the-minute strategic plan, but you do need a collective expression of the board’s aspirations for the organization.  At a minimum, as the surrogate for the full board, the search committee should be able to coalesce around preliminary answers to the big questions affecting the organization’s future. 
  2. What worries us the most?  A clear understanding of shared concerns at the board level can prove enormously useful in discussions with potential CEOs. The concerns usually reflect issues of culture and competence, and the pendulum is always swinging between the two. Clarity around the board’s biggest worries will help CEO candidates understand the board’s priorities. 
  3. How much change can we stand?  In nonprofits with more than a few minutes of operating history, there will be some vocal board members and staff who want everything to stay the same and some who want to change everything.  Every new CEO faces the challenge of honoring the organization’s past while securing its future.  Within this balance of heritage and hope lie enormous challenge, risk, and reward for the board and the next leader.  Which aspects of the organization (and its culture) do we want to preserve, and which aspects do we know should be amended?  How big, really,is our appetite for change?
  4. How can our new CEO add the most value?  An organization with any momentum at all can project future results from current operations, perform a basic gap analysis to understand what is needed to get from here to there, and then recruit to fill the predicted gap.  By asking, “How can our new CEO add the most value,” however, the committee substitutes what’s likely with what’s possible.  Given the assets and issues you know about and the results to be expected under normally competent leadership, ask what are the possibilities under abnormally competent leadership?  The real added value may have little to do with vision and everything to do with execution.  The trick is to determine the best combination consistent with your mission and values.
  5. How can we ensure the CEO’s success?  In most cases,the search committee’s members will become the new CEO’s most logical champions.  More than most other board members, they will be the new CEO’s natural allies, sounding boards, and mentors.  At the outset of the process, every committee member should examine ways in which she or he could be most supportive of the future CEO.  CEOs new to a community or to blindness and vision loss will profit from help negotiating the twists and turns of the new environment.  Managers new to the CEO role itself will profit from a link to peers outside the organization.  This is why I always recommend new CEOs become active in VisionServe Alliance where they will network with, and learn from, their peers … other CEOs. 

VisionServe’s 30th Annual Executive Leadership Conference took place October 28 – 31, 2018, in the heart of downtown Portland, Oregon. 124 conference attendees took part in three days of executive training, networking and discussions with peers in the blindness and visual impairment field.

Conference activities included the welcome reception, great speakers, a Dine Around, and especially having flex time for networking and collaborative brainstorming sessions. Willa Adams, attending from Nu-Visions Center in Lewistown, PA remarked, “I liked the amount of time to meet with other attendees and get out of the building and look around. The lunches were relaxed and conducive to talking to new people.”

Lori Jacobwith and Roxann Mayros
Lori L. Jacobwith shares secrets to her fundraising success

Anna Liotta and Mark Ackermann
Generational expert, Anna Liotta

The conference’s two keynote speakers presented informative sessions on fundraising and generational codes. Lori L. Jacobwith, a fundraiser rated in the top 25 nationally, inspired all attendees with successful techniques from her own experience she used to develop better ways to reach out to donors. Anna Liotta of The Generational Institute, enlightened attendees with fresh ways to understand and work effectively with employees of all ages. “I especially enjoyed and learned from Anna Liotta’s generational presentation as this affects everyone from clients to the board members,” said Denny Moyer, President of Ensight Skills Center in CO.  “Following the conference, I had a conference call which included many of the same people who were in Portland and by the comments and responses to the call I could actually identify (for the most part) the baby boomers and gen Xers.  It was eye opening.”

Other well-received topics included crisis management, board management, Older Individuals who are Blind programs, impact investing, grants management and AFB’s new strategic plans.

dine around group
Getting ready for the Dine Around

The location of Portland did not disappoint, providing ample delicious Dine Around locations within walking distance enjoyed by over 100 attendees. “It’s always such a fun sight to watch folks meeting their Dine Around groups in the hotel lobby, introducing themselves, and becoming fast friends over the course of a meal together,” remarked Roxann Mayros, the outgoing President & CEO of VisionServe Alliance. “The next day we see lots of new friendships were formed just from spending this time together.  We’ve thought about dropping this session because it’s a lot of work to put together, but it’s too popular. If we did, we’d never hear the end of it!”

outgoing board members
Roxann with outgoing board members Steve Pouliot and Mark Ackermann

Speaking of Roxann, after attending and planning upwards of 40 conferences, this was her last conference as the executive in charge of VisionServe Alliance. “Beginning in 1995, I have attended conferences as a member and as an employee of VisionServe Alliance.  In both roles, I have learned from national experts, experienced local customs and cultures in the cities we visited, and most importantly, found life-long friends.  Over the years, we’ve watched each other’s children grow, seen marriages come and go, provided support through sicknesses, and now, the blessing of grandchildren.  This conference had many young strong leaders in attendance.  So even though I was able to lift and affirm my long-time professional and personal friendships, I was most especially, encouraged and pleased to see this next generation of leaders actively participating and learning from one another.”

 

Loretta Harper-Brown with Kimberly Galban-Countryman
1st-time attendee Loretta Harper-Brown with Kimberly Galban-Countryman

Cultivating and supporting this next generation of leaders is one of the main goals of the conference. First-time attending CEO’s are matched up with a “mentor,” another member CEO whose agency might share similar issues/goals. The pair touches base before, during and after the conference. Many members note how helpful that these relationships are to their success at their respective agencies.

 

 

Enjoying past successes and struggles was a sentiment shared by many other attendees, including outgoing board members Mark Ackermann and Steve Pouliot. “In my forty-year not-for-profit career, I have belonged to many professional associations, but I have never been part of an association like VisionServe,” noted Ackermann, outgoing Board Chair.  “The professionalism, comradery, mentorship, richness of learning, are all second to none.”

Other soon-to-be-retired attendees in Portland included Pam Brandin(Vista Center in Palo Alto, CA),

Pam and Roxann
Pam Brandin with Roxann

Lou Tutt (AER in Alexandria, VA), Bob Scheffel (Metrolina Association for the Blind in Charlotte, NC) and Robert Kelly (Conklin Center for the Blind in Daytona Beach, FL). “I felt so nostalgic having it be my last one,” remarked Pam Brandin, who also served as Board Chair of VisionServe Alliance from 2005 – 2008. “It did make me feel proud to have been a part of our growth, looking at all the new leaders and knowing that the membership has expanded greatly in the last decade. It certainly was a lot of fun along with the hard work.”

Laura Park-Leach
Laura Park-Leach

 

 

The weather—which in previous years’ conferences has often presented challenges—included enough sun to give attendees the opportunity to explore the beautiful surroundings nearby including the Chinese Gardens, and the Oregon coastline and the Columbia River Gorge. The final Awards Night took place aboard the Portland Spirit boat, a picturesque setting where one could admire the downtown nightscapes as well as celebrate the award winners: Robert Kelly (Excellence in Leadership Award), Laura Park-Leach (Cathy Holden Excellence in Managerial Leadership Award), and Cathy Holden (Lifetime Achievement Award).

 

We thank everyone who joined us in Portland to network, learn and wish Roxann well in her retirement. Work hard, and we’ll look forward to seeing you at our next conference, our CEO Summit in Nashville, TN, May 5 – 8, 2019.

person writing on a chart

Photo by rawpixel on Unsplash

Roxann Mayros headshot

By Roxann Mayros, President of VisionServe Alliance

For nonprofit agencies serving people with vision loss, there is a need to know the size of the population, characteristics, and needs of people with vision loss at the population level in the nation, state, and community. That knowledge would allow agencies to define “gaps” in the community, so that agencies can compete effectively to respond to consumer needs and compete for scarce resources to provide services.

The model for many rehabilitation agencies is one in which provision of services does not lead to income.  Rather the agency raises funds (in a variety of ways) and provides services to the extent these funds allow.  Invariably, the problem begging for a solution is that an influx of clients does not lead to an influx of income.

The solution lies in gathering better data. With better data, there is the possibility that our field could advocate to increase federal funding for older individuals who are blind, Congress could approve Medicare reimbursement for vision rehabilitation professionals, or large foundations could fund a national service delivery system.

So, how do we find out how many people need vision rehabilitation services?

In the past, there have been multiple paper-based surveys that have asked questions in a variety of inconsistent ways about vision, eye diseases, and function; therefore, estimates differ greatly.  For example, one survey asked, “Can you read the newspaper?”, without defining whether they could read with glasses or without, whether the person is literate, or speaks a different language than the paper is written in.  Because every survey asks questions about vision loss in different ways, there are a variety of numbers to use.  So, when people ask me how many “blind” people there are, I say, “How many do you want there to be, and I’ll find a study to support it.”

Now though, with advanced data base management, researchers can gather data from a variety of sources such as electronic health records and the American Academy of Ophthalmology’s Iris Registry, to present data about vision and eye health that is state and county level specific.  The CDC’s Vision Health Initiative (VHI) and NORC at the University of Chicago have taken the lead in developing a new tool called the National Vision and Eye Health Surveillance System (VEHSS)The VEHSS leverages new and existing data sources to help health professionals, researchers, policy makers, and patients understand the scope of vision loss, eye disorders, and eye care services in the United States. VEHSS is intended to grow and improve over time based on input and needs of the vision health community.

I encourage you to visit the Vision & Eye Health data portal at https://www.cdc.gov/visionhealth/visionhealthdata/index.html  to create your own filtered dataset, customize visualizations, download data, and more.  Here are just some of the things you can do:

  • Identify and collect existing sources of information on vision and eye health.
  • Create case definitions to analyze data consistently.
  • Analyze data to estimate:
  • The prevalence of eye disorders and disabilities.
  • The use of eye-health services.
  • Health disparities in visual health treatment and outcomes.
  • Investigate methods to leverage multiple existing data sources to create new estimates of the prevalence of vision loss and eye disease.
  • Disseminate the information developed by the system to key stakeholders and respond to feedback to continually improve the quality and usefulness of the system.

Roxann Mayros headshotBy Roxann Mayros, President of VisionServe Alliance

Ashlie Benson and Kyle Hagge, Trinity Fellows at Marquette University in Milwaukee recently surveyed 78 nonprofits about lobbying activities.  Here’s what they found.  Only 60% did any kind of lobbying.  The survey authors said, “We were anticipating nonprofits facing a lot of barriers to lobbying.  … We hope nonprofits see that they can be political, it’s just that they cannot be partisan.”  Many nonprofit leaders and boards believe the tax-exempt status will be jeopardized if they engage in advocacy, lobbying, or voter registration.

To help nonprofits improve their lobbying/advocacy efforts, BoardSource, in partnership with five other organizations/foundations, created the web-site: www.standforyourmission.org.  It provides resources and tools to create positive change through advocacy.  Stand for Your Mission challenges nonprofit decision-makers to stand up for their organizations by actively representing their mission and values, i.e., the people they serve, by creating public will for positive social change.  Stand for Your Mission provides a guidebook, training videos, templates, how-to’s, and more.  It is easy-to-use and resources are free.

Frank Martinelli of Shepherd Express listed some do’s and don’ts based on the resources from Stand for Your Mission:

These activities are allowed:

  • Educating the public and decision-makers about your work in a nonpartisan way.
  • Sharing information about how public dollars positively impact your work and your community.
  • Communicating how broader issues impact your mission and the people that you serve.

These activities are allowed as long as nonprofits carry them out in compliance within certain reasonable guidelines:

  • Voter education, registration and candidate forums.
  • Naming legislators who support (or oppose) a specific piece of legislation.
  • Limited lobbying on behalf of the organization.
  • Lobbying and campaigning as private citizens.

These activities are not allowed:

  • Organizational support for (or opposition to) a candidate or set of candidates.
  • Spending federal grant funds on lobbying.

With 1.5 million nonprofits in the United States, your mission and your message could easily get lost or not heard, effectively impacting current and potential partnerships, stronger policies, and deeper funding. This is why it is important that even the smallest organization create a formal approach to lobbying and advocacy at their local, state and federal levels.  How do you do this with limited staff and limited budgets? Think broadly – think about your board members, constituents, the people you serve, all staff (not just the Executive Director), and volunteers. Use the free resources at Stand for Your Mission, and remember … “It takes a Village.”

Does your nonprofit “lobby?” What activities do you do? Comment below.

 

 

Dear Friends,
In honor of Roxann’s retirement at the end of this year, we are offering members and friends of VisionServe Alliance the opportunity to place an ad in this fall’s 30th Executive Leadership Conference program booklet as a tribute to Roxann’s 13 years of leading VisionServe Alliance.

We know you will think of your favorite “Roxann” moment to remember and share. We look forward to celebrating these moments with Roxann and you in Portland this October.

Options are:
Full Page 7 ¾ x 9 ¾”- $500
Half page ad horizontal 7 ¾ x 4 ¾” – $250
Quarter page ad 3 ¾ x 4 ¾” – $100
1 or 2 Sentence message – $50

Ad Specifications:
Full, half and quarter-page ads may be color, two-color, or black and white. Please submit ads in electronic format (preferably Hi-res PDF files) to Wendy Hymes at wendy@visionservealliance.org. 1 or 2 sentence messages may be emailed directly to Wendy. Please also send a text version of the ad for our readers who are blind and visually impaired.

Ad Deadline:
We must receive your tribute ad order form and payment by:
5:00 pm Friday September 28

Click HERE to download the tribute ad ORDER FORM
Click HERE to view sizes of full, half and quarter-page ads

Diane Nelson headshot

Sincerely,

signature

 

 

Diane Nelson
Power of R Campaign Chair

 

Roxann Mayros headshotby Roxann Mayros, President and CEO, VisionServe Alliance

In partnership with the National Industries for the Blind (NIB) and the National Association for the Employment of People Who Are Blind (NAEPB), VisionServe Alliance has sponsored a Compensation and Benefits Survey biennially since 2010.  This is the only survey in the field of blindness and low vision that provides data on executive and vision rehabilitation specific professions.

There are several nonprofit compensation surveys available these days, so why does VisionServe Alliance’s Board of Directors believe this survey is necessary and important?  For a couple of reasons.  First, there is a national shortage of vision rehabilitation professionals that provide rehabilitation training, travel skills, jobs, and educational services to people with vision loss, and no other organization is surveying this class of employees.  In a limited market, it is important that VisionServe members have good salary/benefit information to help attract and retain the talent needed to reach their mission. Sometimes salary alone isn’t enough, and leaders need to know about the benefits other organizations are providing.

Second, because the IRS considers compensation to include the total of all income received by the CEO/Executive Director, including not only salary, but also contributions to retirement accounts, housing and car allowances, insurance premiums paid by the nonprofit to benefit the executive director only, and even club memberships if the membership primarily benefits the individual rather than the nonprofit (www.nonprofitcenter.org). This explains what sets VisionServe Alliance’s survey apart – we inquire about compensation AND benefits.  Attracting top leaders to our member organizations is competitive and can be complicated, especially when the IRS Form 990 requires reporting about the “comparable” data used by an organization to justify salaries paid to an organization’s top compensated employees.

With 5 surveys under our belt – 2018 survey results were recently delivered to members and associates – we have observed a few important trends:

  • Despite political and economic turbulence throughout 2017, survey participants continue to experience and to reflect the strong demand for the services offered by nonprofits in the field of vision rehabilitation, education and employment.
  • Over 5 surveys (2010 – 2018), we continue to see a difference in pay between men and women, as well as a pattern of women relatively more often found as President/CEO/Executive Director of small organizations and men more often at large organizations. This appears to account for much of the overall difference in pay.
  • We were surprised to see that women made gains in 2018. When we grouped similarly sized organizations together, we found no pattern of pay differences between the men and women in each group. In fact, in some groups the average pay for women in the President/CEO/Executive Director is higher than the pay for men.
  • The great majority (83%) of survey participants expect to give regular pay increases over the next twelve months. The median overall annual pay increase reported is 3%. These numbers are almost identical to the results reported in previous surveys.
  • Around two-thirds (66%) of survey participants expect increased competition from other employers to attract and retain qualified employees during the next twelve months. Just over half (54%) plan to increase their regular, full-time workforce in the year ahead.

Our Compensation and Benefits Survey reflects both optimism and the challenges of finding, hiring, and staffing VisionServe Alliance member organizations, especially with shortages of teachers of the visually impaired and vision rehabilitation professionals.

If you did not participate in the survey and are a member of VisionServe Alliance or NAEPB, you may purchase a copy that is calibrated to your community’s local labor statistics for $250 by e-mailing wendy@visionservealliance.org.  If you are not a member, you may purchase a copy for $500.

VSA Blog head

Roxann Mayros headshotby Roxann Mayros, President and CEO, VisionServe Alliance

With most of the news focused on immigration issues, I was interested when a message from Independent Sector appeared in my in-box talking about a new series of articles and a Podcast focused on the Civil Society.  I clicked in expecting to read about how the United States was founded and enhanced by people coming to these shores to participate in a democracy that is the envy of the entire world.  I expected to read about diversity and immigration issues.  What I did not expect to read was a new name to describe the work done by nonprofits.  In my years of study – I have a Master’s and two certificates in Nonprofit Management/Leadership – I have heard the nonprofit world called the third sector, charitable sector, impact sector, voluntary sector, and nonprofit sector, but never the Civil Society, which Independent Sector describes as  “private action in service of the public good—as opposed to public action for public good (which is government), or private action for private good (which is business).”

No matter what we call what we do, Independent Sector says that it all adds up to “1.5 million organizations that employ more than 11 million professionals, mobilize more than 63 million volunteers each year, and take in more than $390 billion in philanthropic donations annually, plus many hundreds of billions in government grants and contracts.”   So, whatever we call ourselves, the nonprofit organizations in America touch every aspect of our daily lives in profound—though often unnoticed—ways.

Even so, we are in an era when, as a sector, we are facing challenges to the way we do business.  Last year’s tax law disincentivizes the everyday donor from making charitable contributions. The tax law also made changes to the Unrelated Business Income Tax (UBIT) that could significantly increase nonprofits’ tax burden. And the potential repeal of the Johnson Amendment would open charitable nonprofits, houses of worship, and foundations to the demands for political endorsements, contributions, and other partisan electioneering activities. Dan Cardinelli, CEO of Independent Sector also identifies in his Blog posting about Civil Societies – https://ssir.org/articles/entry/the_adaptive_challenge_of_restoring_trust_in_civil_society – other challenges, including the concentration of wealth in the top 1%, how we define community, and sharp increases in political and cultural polarization.

If you are reading this, and you are a nonprofit leader, I encourage you to follow these issues by reading VisionServe’s regular updates, looking at our website for news, and searching Google.  Once you are up-to-date, contact your legislators to tell them NOT to repeal the Johnson Amendment, and then contact the IRS and ask them to clarify how the law should be interpreted because nonprofits are already expected to make payments on things like parking or transit passes and other fringe benefits. And finally, think about how you interact with your donor base – you must give them a reason to want to continue to donate to your organization even though most will no longer be able to itemize it on their income taxes.

an American flag flying in front of the US Dept of Commerce
Photo by Brandon Mowinkel on Unsplash

Roxann Mayros headshotBy Roxann Mayros, President & CEO, VisionServe Alliance

In my blog posted on May 21st, I provided background information to help explain why professional services provided to people with vision loss by vision rehabilitation therapists, orientation and mobility specialists, and low vision therapists are not reimbursed by Medicare or medical insurance (third-party payers).  Even though the effort to see these professionals reimbursed began in 1990, and there was a five-year Demonstration Project to prove the efficacy of these professionals, they still do not qualify for reimbursement in 2018. We learned many lessons during the very expensive and decades long effort.  We hope that the following “lessons learned” will guide future endeavors to see this very important category of nationally certified professionals recognized and reimbursed by third-party payers.

  • University degree programs must move. Medicare is a medical model – it does not recognize, nor does it reimburse professionals with special education degrees.  University programs providing degrees in vision rehabilitation therapies with a focus on adults, must be housed in the Department of Allied Health Professions and provide degrees in Orientation & Mobility, or Vision Rehabilitation Therapy, or Low Vision Therapy, and not special education.
  • The current system for referrals must change. Most referrals currently come from State Agencies for the Blind, and they are not reimbursable by third-party payers.  Referrals from Ophthalmologists, Optometrists, or other medical doctors are reimbursable.  Medicare and other third-party payers require that the patient be under the care of a physician while therapies are being administered.  The physician must certify the patient’s need for services, and sign-off on the plan of care and follow-up that includes evidence-based outcomes that include written progress notes and a summary.
  • Ophthalmologists, Optometrists, and even Occupational Therapists, must “buy-in” and be supportive. Legislators know the organizations representing these medical professions and they will ask if they are in support.  During the early days of our campaign, we did not seek their involvement or understanding, so they literally advocated against reimbursement for vision rehabilitation professionals.  In the last campaign before the Medicare Demonstration Project, we were far more inclusive, asking for advice, bringing representatives on visits with us to legislative offices, and more.  It wasn’t easy – it took a lot of convincing that there would be a benefit to their professions before they came out in support.
  • Medicare recognizes State licensing which they believe assures “quality” of the service providers (medicarenow.org). It took a lot of lobbying and negotiating with the Centers for Medicare and Medicaid (CMS) – and it will again – to recognize ACVREP certification during the Demonstration Project. We are still the only profession that has ever received reimbursement based on national certification instead of State licensing.
  • The legislative process is long, expensive, and arduous. It will take several attempts and several years to find a champion/s to support the bill, bi-partisan support, a good lobbyist to shepherd and advise, traversing the review and hearings process by appropriate (sub)committees of both the House and Senate, and to bring enough advocates together to make an impact.  And you better hope that your champion is re-elected, or you will start all over from the beginning.
  • Cost savings must be proven, so studies are necessary. Experts sanctioned by Congress must be hired to study the impact and cost of reimbursing vision rehabilitation professionals, and to produce recommendations and/or administrative actions to legislative (sub)committees.  These studies have been impacted in the past by the lack of data and evidence-based outcomes in relation to vision rehabilitation.
  • Lobbyists are a necessity. No lay-man, grass-roots advocate, or vision rehabilitation professional has the necessary connections at the Federal level, nor the knowledge required, to “get meetings with the right people,” or to initiate and move a Bill through Congress.  Lobbyists know the system, and they know how to make it work.  They know how to write appropriate language for a Bill, how to get it filed and numbered, who in Congress works with whom, how committees work, and more.  Even though expensive, they are an absolute necessity!
  • It requires “boots on the ground.” Getting a bill passed cannot be done by writing letters, leaving messages, or visiting a legislator once.  It has to be done in person in legislators’ offices in Washington, D.C.  Advocacy must be done frequently, with urgency, and by more than a small cadre of devotees.
  • It takes a dedicated and full-time staff. As explained above, it is necessary and time consuming to find enough money for studies and lobbyists, getting the right people on the bus, using a data base to track progress or next steps, organizing on-site advocacy days/meetings, seeking support from allied health professionals, meeting with legislators and their aids, organizing policy forums and Congressional updates, producing written materials, understanding the legislative process, writing press releases or journal articles, attending (hundreds if not thousands) of meetings, and shepherding a bill through Congress.  None of this can be accomplished without one or more full-time staff positions.

The bottom line is that it is morally and professionally “right” to reimburse Master degreed and nationally certified Vision Rehabilitation Therapists who teach people how to live independently, Orientation and Mobility Specialists who teach travel skills using a white cane or guide dog, and Low Vision Therapists who teach how to use remaining vision and specialized tools to remain independent.  I end this by challenging University programs to move degree programs from Education to Allied Health, current leaders to develop national standards and evidence-based outcomes, and to all of you to successfully shepherd a bill through Congress that will order CMS to amend Medicare law to add a new category of services provided by vision rehabilitation professionals!

Tanque Verde Ranch signThe setting for our 2018 CEO Summit was unique with the aroma of horses, no televisions, and astounding views at every turn. The Tanque Verde Ranch also offered attendees an opportunity to let go of the day-to-day stress of organizational leadership; and to network, relax, and learn.

The goals for VisionServe’s CEO Summit included providing focused high-level learning that keeps you thinking, sending each attending leader back to their organizations refreshed and ready to lead, and providing extensive opportunities for networking and information sharing.  The ranch location was successful in achieving these goals even more so than a city hotel location.

“VisionServe is the “go-to” conference for high-level learning for me,” remarked Elly du Pre, Executive Director of Florida Agencies Serving the Blind.  “In addition to the presentations, that learning comes from the networking and sharing.  This conference had the best networking opportunities of any other conference I have attended.  As far as “refreshed” goes, I had a great time…”

 

US Trust presenters
Board Chair, Mark Ackermann and President, Roxann Mayros, with Glen MacDonald, William Jarvis, and Joseph Danowsky from US Trust

The conference offered a pre-conference symposium: “The 2018 Tax Bill and Financial Management Challenges Facing Nonprofit Institutions,” hosted by three experts from corporate partner, US Trust, William Jarvis, Managing Director of US Trust and forger Executive Director of the Commonfund Institute, Joseph Danowsky, Managing Director, and Glen MacDonald, Senior Vice President & Institutional Client Advisor.  The presentation offered advice to nonprofit leaders on how the new tax law passed in late 2017 would be anticipated to affect nonprofit finances such as tax implications and future donations to nonprofits in the coming year.

Doug Stevenson, featured speaker
Doug Stevenson, master storyteller and featured speaker

The CEO Summit offered attendees two keynote speakers. Day 1 focused on storytelling for CEO’s with master storyteller, Doug Stevenson, CSP, Founder and President of Story Theater International. Doug’s session didn’t just show us how to tell stories, but instead taught us the techniques to make our own stories more effective and persuasive for fundraising, legislative visits, and more.

 

 

Small group exercises at the 3rd Annual CEO Summit 2018
Small group exercises at the 3rd Annual CEO Summit 2018

“The storytelling exercises were great ways to deepen the relationships between CEOs as well as valuable skills for so many aspects of CEO communication,” remarked Dan Needham.

 

 

Jane Wei-Skillern, speaker
Jane Wei-Skillern presents, “The New Network Leader”

Day 2 our featured speaker was Jane Wei-Skillern, Senior Fellow at the Center for Social Sector Leadership at UC Berkeley’s Haas School of Business, who presented the essence on how to foster successful collaborations in the nonprofit sector.  Jane left us all thinking as she presented a new approach to collaborations that is timely and important to our field. Her Network Principles include: 1) Mission, not organization. 2) Trust, not control. 3) Humility, not brand. 4) Network, not hub.

attendees at CEO Summit 2018
Board members Mark Ackermann and Mike Bina

Miki Jordan, President of Wayfinder Family Services in Los Angeles, California, remarked that the summit was the “perfect setting and blend of networking and speakers.”

Other attendees expressed similar reactions.  “Thank you so much for the amazingly wonderful conference! I think it’s the best I can remember in 20+ years of attending them,” said Pam Brandin, President of the Vista Center in Palo Alto, California.

Horse riders Lou Tutt and Pete Benavidez
Horse riders Lou Tutt and Pete Benavidez

The opportunity to connect with peers in the field was ranked the most important aspect of attending the CEO Summit, and attendees had ample opportunities to network with other national leaders and discuss issues pertinent to the blindness and vision impairment nonprofit sector.  Along with sharing all our meals together, attendees signed up for activities every afternoon where new friendships were made.

 

Board member Thomas Panek with 1st-time attendee Joe Bogart
Board member Thomas Panek with 1st-time attendee Joe Bogart

 

Another unique VisionServe Alliance tradition: assigning a meeting mentor to all first-time attendees.  Mentors connected with their mentees before the conference and also made sure that new attendees felt included during all the conference activities.

 

Spiel and Steal session
Spiel and Steal

The final morning of our summit ended with a breakfast ride up to the Old Homestead, where we enjoyed the ranch’s famous blueberry pancakes and held our ever-popular Spiel and Steal session, an open forum where attendees shared news from their organizations, a replicable program idea, or asked a question of their leader peers.

 

Even if you couldn’t attend the summit, members can access all conference materials including speaker PowerPoints, handouts, and links to the videos of the speakers’ presentations by logging into our members only portal.

We hope you’ll make plans to attend our next conference, the fall Executive Leadership Conference in Portland, Oregon, October 28 – 31, 2018.