Working with Nepalis to Enhance Disability Inclusion, Part 1

by Paula Sotnik

I recently traveled to Nepal to learn and share information about disability inclusion. Here’s the first part of an interview I gave to the Nepali nonprofit NAPD Nepal. The second part will follow in another blog post.

This interview will appear in NAPD Nepal’s annual publication. Some of the language has been adapted here for clarity and length.

1. Could you please share the purpose of your visit to Nepal?

Our organization, the Institute for Community Inclusion (ICI), had the great opportunity to host an IREX Community Solutions Program fellow, Sagar Prasain, from Nepal last fall. This initiative was funded by the U.S. Department of State.

The ICI is a research and training center at the University of Massachusetts Boston. Our work supports the rights of children and adults with disabilities to participate in all aspects of the community. 

Mr. Prasain’s goal was to learn about U.S. disability law, policies, and practices. He also educated our staff about what it’s like to live with a disability in Nepal. Mr. Prasain and I developed a project to address some of the access issues in Nepal, through his newly formed nongovernmental organization, Sangai Hami. I was fortunate to obtain a travel grant to Nepal to continue our work.

My main objectives were these: 

  1. Provide a training (to participants with and without disabilities) on access, accommodations, and the Convention on the Rights of Persons with Disabilities.
  2. Learn as much as I could about what it’s like to live with a disability in Nepal.
  3. Learn about advocacy and disability services by visiting many disability organizations and talking to leaders in the disability community.

My trip to Nepal was a life-changing experience. I am truly grateful to everyone who spent time and educated me. Also, I am grateful for the U.S. Department of State grant awarded to the IREX Community Solutions Program, which made Mr. Prasain’s fellowship and my visit to Nepal possible.

I truly hope to return to this beautiful and embracing country one day in the future and continue to work with my new friends to achieve a fully inclusive Nepal.

2. How did you find the disability movement in Nepal? 

With very few resources, a group of dedicated people who are passionate about equality and inclusion, and possess a strong and consistent voice, are working to fully include individuals with disabilities in all aspects of their communities. From the leadership of the National Federation of the Disabled Nepal and the National Association of the Physically Disabled Nepal, to the dedicated mothers of children with Down syndrome who started the Down Syndrome Society of Nepal in a mother’s home, these individuals are providing opportunities for individuals with disabilities of all ages to learn, grow, and succeed.  

I met with a young woman who left her government position to start a much-needed school: the Special School for Disabled and Rehabilitation Center. This school has successfully transitioned children with autism and other developmental disabilities to regular education classes. And the staff at the National Association of Hard of Hearing and Deafened Nepal are educating schools and parents about hearing disabilities. 

I was inspired by the young leaders with disabilities who tirelessly, articulately, and intelligently study best practices, inclusive policies, and strategies for potential application to Nepal. I was also encouraged to see young leaders without disabilities in healthcare, architecture, and the media participate in our training. They developed plans for advancing equal rights, access, and inclusion in their various fields.

So while accessibility issues exist and progressive programs for people with significant disabilities are still in development, the efforts and strength of committed Nepalis, with and without disabilities, will continue the momentum necessary for including all citizens in their communities. 

3. What are the major differences you have found between your country and Nepal in terms of protecting and promoting the human rights of people with disabilities?

The United States has a long history of advocacy for equal rights, starting with the Civil Rights Act of 1964. This act laid the foundation for equal rights for individuals with disabilities, and led to a number of other laws, starting with the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA) in 1990. The ADA is a wide-ranging civil rights law that prohibits discrimination based on disability.

These laws would not have been passed without advocacy by individuals with disabilities. One action, called the Capitol Crawl, had a huge impact when the ADA was being debated. Over 60 activists left their wheelchairs and mobility devices and began crawling the 83 stone steps up to the U.S. Capitol building to demonstrate the unfairness and cruelties of inaccessibility.

The ADA was passed shortly after. This strong advocacy action symbolizes how people with disabilities unite, have a voice, and make a difference.

Although Nepal has ratified the Convention on the Rights of People with Disabilities and enacted other laws, such as the Social Welfare Act (1992) and the Education Act (2000), Nepalis with disabilities indicate that these laws and related policies are not implemented, and there are no consequences for noncompliance. More importantly, I learned that these laws mandate what should be “provided” to people with disabilities, with rather than guaranteeing equal rights and full participation.

Also, under these laws, the government has the power to provide access and supports, but is not obligated to ensure equal and accessible resources and services. Thus, governmental authorities may be able to postpone or deny demands for equal conditions due to a lack of resources.

However, it may not be fair to compare countries, and we need to take Nepal’s political history into account. Nepalis have only been able to exercise their democratic rights since 2006. This newly democratic society will continue to set a strong foundation for the future development of rights-based disability policy.


Vision Studies Program Wins $1.25 Million Grant

by Anya Weber

The Vision Studies program at the UMass Boston School for Global Inclusion and Social Development (SGISD) has been awarded a $1.25 million grant by the federal Office of Special Education Programs (OSEP). The grant will allow the SGISD Vision Studies Orientation and Mobility program to sustain and expand its distance education options, adding Virginia and Puerto Rico to the states and territories with access to these online classes. 

The Vision Studies program trains its students to become highly qualified specialists in supporting people with visual impairments and blindness. The new grant will specifically fund distance education in Orientation and Mobility, or O&M. O&M focuses on supporting people with blindness and visual impairments to navigate safely and independently, for example, walking with a cane or with a guide dog.

The program’s distance-learning offerings already extend from Boston across the globe, with students right here in New England and as far away as the Pacific Islands.

Last year, OSEP awarded $1.25 million to the Vision Studies program’s “Teacher of Students with Visual Impairment,” or TVI, track. TVI involves training teachers to work in classrooms that include students with blindness and low vision.

“This expansion of our funding will let us increase the number of vision specialists available nationally,” says Robert McCulley, the director of the Northeast Regional Center for Vision Education (the ICI program within SGISD that houses these programs). “It will also bring in more students from diverse bilingual and cultural backgrounds.”

Laura Bozeman, Associate Professor and Program Director of Vision Studies, will be working with McCulley to run the expanded menu of newly funded classes.

The partnering universities on the new grant are the University of Puerto Rico (with a primarily Hispanic student body), and George Mason University in Virginia (which also has a high minority population). George Mason University is part of a vision consortium within Virginia that includes four other partnering schools, one of which is Norfolk State University, a member of Historically Black Colleges and Universities (HBCU).

Congratulations to the Vision Studies program for its continued success! 


My Award from the Disability Law Center

by Ashley Wolfe (with Anya Weber)

On June 17, I received the Individual Leadership Award from the Disability Law Center (DLC). I accepted the award at the DLC’s Annual Benefit and Auction in Cambridge, Massachusetts.

When I held up my trophy, I was showing the audience that I’m not only someone with intellectual and developmental disabilities. I’m also a real person with a real heart and a real life.

When I won this amazing award, I felt like I deserved it. I got the award because of the participatory human research that I do at the ICI. This kind of research lets people with disabilities be involved with the research process, instead of just being research subjects.

I also got the award because I am a self-advocate. That is someone who stands up for what she wants and needs, and helps others do the same.

Getting the award made me feel proud of the work I do. It also made me feel like I am part of a larger community.

The DLC is important for people with disabilities in Massachusetts. It helps protect our rights and fight discrimination. It also provides support and services to people with all kinds of disabilities. For example, it helps us get the accommodations we need to do our jobs well.

Getting this award showed me that I’m a good and compassionate person who can succeed just by being myself.

                   Wolfe speaking at the Annual Benefit and Auction


ICI Staff Present at National APSE Conference

by Patrick Hoff

Five ICI staff members attended the 25th annual APSE conference in Long Beach, California, where they presented and participated in multiple sessions during the three-day event.

APSE is a national organization that focuses on integrated employment and career advancement opportunities for individuals with disabilities. Founded in 1988, it has chapters in 39 states and the District of Columbia, and over 3,000 members.

ICI staffers David Hoff, Cindy Thomas, Karen Flippo, Melanie Jordan, and John Butterworth each presented in at least one breakout session. Hoff (full disclosure: he’s this author’s dad) serves on the board of directors of APSE and just completed a two-year term as president. He was also the keynote speaker on the second day of the conference.

Hoff’s keynote, titled “Employment First: Time to Get Real,” focused on the progress that has been made in terms of Employment First. Employment First refers to public policies stating that employment that is fully integrated within the general workforce is the preferred option for all people with disabilities, and that programs and services supporting people with disabilities will align with these policies.

He also challenged audience members to consider their own views of employment of people with significant disabilities, and how day-to-day actions as individuals, service providers, and systems can run counter to the Employment First philosophy.

Cindy Thomas presented about the Massachusetts Blueprint for Success, a plan released by the state in November 2013 that presents a clear agenda for supporting individuals in integrated employment and closing sheltered workshops. Thomas reviewed the eight years of work that laid a foundation for the Blueprint, the key partnerships within the program, and the efforts currently underway. Thomas presented with Margaret Van Gelder of the Massachusetts Department of Developmental Services.

Karen Flippo presented three times at the conference. Flippo, who is the treasurer of the Rhode Island chapter of APSE, first presented with Julie Barol, Katie Wolf Whaley, and Katie Pitts about chapter leadership and unique ideas that each of them have used to help their chapters.

Flippo’s second presentation, with Olivia Raynor, Rich Sanders, and fellow ICI staffer John Butterworth, discussed eight states that have received funding from the Administration on Intellectual and Developmental Disabilities to address barriers that young adults with disabilities experience when transitioning from high school to employment.

Flippo’s final presentation examined essential components of an employment services workforce development system and how it contributes to integrated employment outcomes. SueAnn Morrow, an employment services specialist from Iowa, was a co-presenter.

John Butterworth also led a presentation with Dorothy Hiersteiner and Josh Engler about employment trends for adults with intellectual and developmental disabilities. The presenters examined data from the National Core Indicators and brought up suggestions for policy development to improve employment outcomes.

Melanie Jordan’s presentation helped participants to develop responses to objections employers typically voice when hiring job seekers with disabilities. Framed as a Jeopardy game, “contestants” (audience members) role-played responses to common business objections with a real employer. Jordan and her co-presenter Mark Winkler offered strategies for dealing with employer concerns, along with education resources and a summary of past research regarding employer attitudes about hiring people with disabilities. 


APSE Keynote Speakers Address Disabilities in the Media

by Patrick Hoff

At the 25th annual APSE national conference, attendees heard dozens of presenters discuss the importance of employment for people with disabilities. Two of the conference’s keynote speakers addressed the representation of people with disabilities in media and entertainment.

Ray Bradford, a nationally recognized advocate for diversity, gave the opening keynote, and Jenni Gold, an acclaimed director and screenwriter, presented the closing keynote. Bradford spoke about opportunities for people with disabilities in the arts and media, and Gold discussed how people with disabilities are portrayed in the media.

Bradford founded the Bradford Advocacy Group, a consulting agency that lobbies for a more inclusive media landscape. He also served as the national director of policy and diversity advocacy for the labor union SAG-AFTRA (Screen Actors Guild – American Federation of Television and Radio Artists) before it merged with SAG in 2012.

Bradford is part of a global campaign seeking equal opportunities for people with disabilities in arts and media, called I AM PWD. The focus of the campaign is access (removing physical barriers and discrimination against people with disabilities), inclusion (both of actors with disabilities, and of disability within storylines), and accuracy (ensuring that stories about people with disabilities are complex and multi-dimensional).

Bradford shared with the audience a web series about an actress trying to navigate Hollywood in a wheelchair, called My Gimpy Life. Starring and created by Teal Sherer, two seasons of the comedy series are available on YouTube.

Jenni Gold, another keynote speaker, is a screenwriter, director, and editor, and has won multiple awards, including one at the Valley Film Festival for her documentary CinemAbility. She founded Gold Pictures, Inc., a development and production company, in 2001. Gold has muscular dystrophy and has used a wheelchair since the age of seven.

Gold’s documentary takes a look at how disabilities are portrayed in the media through interviews with studio executives, film historians, and celebrities. It also uses clips from movies and television programs to showcase the impact that the media has on society. The film has received high praise from the L.A. Times, Cinema Sentries, J.J. Abrams, and Vince Gilligan. 


New Law Supports Employment for People with Disabilities (Part 2)

by Patrick Hoff 

This is the second of two posts about the new Workforce Innovation and Opportunity Act and how it impacts people with disabilities. Read the first post here.

The WIOA helps define a number of terms used within earlier legislation. Though the Rehabilitation Act had previously used the term competitive employment, the phrase was never defined. With the WIOA, the term competitive integrated employment (note the addition of “integrated”) means full-time or part-time work at minimum wage or higher, with wages and benefits comparable to those without disabilities performing the same work, and fully integrated with co-workers without disabilities.

The new act also provides a detailed definition of customized employment, a term previously undefined in federal statute. As a result, customized employment is now among the services available from public vocational rehabilitation (VR) nationwide.

The definition of supported employment has been modified to clarify that supported employment is integrated competitive employment. Customized employment is also now included within the definition of supported employment, and the standard post-employment support services have been extended from 18 to 24 months.

Under the WIOA, half of the money received under the Supported Employment State Grant program must be used to support youth up to age 24 with the most significant disabilities. These youth may receive extended services for up to four years.

Other provisions in the act change the way that One-Stop Career Centers (a.k.a. American Job Centers) are funded. The WIOA also changes the role of public VR in the One-Stop system, increases the requirements for workforce development systems to meet the needs of job seekers with disabilities, and moves several federal programs from the Department of Education to the Department of Health and Human Services.

For more on the WIOA and how it will roll out, consult the U.S. Department of Labor’s Training and Employment Notice.


New Law Supports Employment for People with Disabilities (Part 1)

by Patrick Hoff

This is the first of two posts about the new Workforce Innovation and Opportunity Act and how it impacts people with disabilities.

On July 22, President Barack Obama signed the Workforce Innovation and Opportunity Act (WIOA) into law. The WIOA is a bipartisan, bicameral bill that reauthorizes and improves upon the 1998 Workforce Innovation Act and Rehabilitation Act.

Though the new act improves workforce development for all Americans, one of its specific aims is to lower the unemployment rate of people with disabilities. Individuals with disabilities have the highest unemployment rate of any group, and almost three quarters do not participate in the workforce at all, according to the U.S. Department of Labor.

The WIOA has the potential to create significant advancement in employment for people with disabilities. Its provisions include limitations on the use of subminimum wage, increased funding for transitioning from school to adult life, defining terms such as competitive integrated employment and customized employment, and focusing supported employment state grants on youth.

In his comments, the President said that the WIOA “will help workers, including workers with disabilities, access employment, education, job-driven training, and support services that give them the chance to advance their careers and secure the good jobs of the future.”

Beginning in 2016, a series of steps must be followed before an individual under the age of 24 can be placed in a job that pays less than minimum wage (typically positions within sheltered workshops or enclaves). The WIOA also prohibits schools from contracting with sub-minimum wage providers, ensuring that schools will not be able to pay sheltered workshops to assist with the transition from school to the workforce.

In addition, vocational rehabilitation (VR) will have a larger role in transition from school to adult life. Fifteen percent of each state’s public VR funds must now be used for pre-employment transition services, including job exploration and counseling, work-based learning experiences, workplace readiness training, and training on self-advocacy.

For more on the WIOA and how it will roll out, consult the U.S. Department of Labor’s Training and Employment Notice.


Get to Know the Program Coordinator for the School for Global Inclusion and Social Development

By Patrick Hoff


Kaitlyn Siner has worked in a number of industries, from healthcare to agriculture, but when she talks about her current field, education, she talks enthusiastically with a passion that only comes from people who truly believe in their work.

Siner, who received her Master’s degree in English and Writing from UMass Boston in 2013, currently serves as the first program coordinator for UMass Boston’s School for Global Inclusion and Social Development.

SGISD was approved by UMass Boston last fall, and is among the first graduate schools in the world that focuses on wellness and social development from an international perspective. It’s focus and mission is dedicated to empowering communities locally, nationally, and internationally to advance wellness, educational access, economic participation, and social opportunities for all their citizens. The school is geared towards developing leaders, building knowledge, and demonstrating real-world innovations that embrace inclusion.

Siner said she has gotten to see the school grow and form, and she has loved being part of something new that she can believe in.

“I really stand behind its mission and want to see it carried out to its fullest, [which] makes [the school] very unique and special for me,” she said.

Siner began her career in Boston working in public relations. She learned business skills through her PR work and said she met interesting people, but she didn’t enjoy the corporate world she had to reside in. She began to reevaluate, trying to find her next step.

“What I came to realize was what I’d always really liked to do was write, so , I decided to go back for a degree in English ,” Siner said.

Siner applied to UMass Boston, which appealed to her because of the English program’s multiple flexible tracks that allowed her to get her English degree while suiting all of her interests, and gave her the opportunity to teach composition to students through a graduate assistantship.

Along with studying and teaching, Siner also assisted international students obtain working visas to stay in the United States. She said between working with the international students and teaching at UMass Boston, which has a large population of international students, she dealt with some similar situations, such as English as a second language, first generation college students and cultural barriers.

“I found that teaching at UMass really added a rich dimension to the work that I was doing in and out of school,” Siner said. “Working at the University, and trying to integrate learning that was inclusive for its studentsI was pursuing at the university in the added an important layer of understanding and meaning to my work, and really helped me feel like I was on the right career track.”

During Siner’s third and final year at UMass Boston, she was introduced to William Kiernan, now dean of SGISD. When they met, Kiernan was developing the School for Global Inclusion and Social Development and needed assistance with the program, and marketing and recruitment efforts. Since Siner had both a background in marketing and an understanding of the University and the needs of its students, Kiernan offered Siner a graduate assistantship for her last year at UMass Boston.

“[SGISD] seemed to come at a time where it really spoke to me … professionally and personally in terms of my values and … what I wanted to see carried out into my next steps,” Siner said, adding, “I felt very fortuitous that I ran into it when I did because it allowed me to merge my previous skills with a school that was focused on things I had become passionate about and invested in, such as working across populations, and developing a deeper understanding of how we deal with cultural differences, and what each side can learn from one another.

After her graduate assistantship was finished and the school was officially approved, Siner moved to become the school’s first program coordinator.

Being the first program coordinator has brought its challenges, Siner said, such as helping to manage the daily functions of a new venture, in addition to being on top of all of the school’s moving parts, but she views every challenge positively.

“One, I really believe in the school; two, there’s an amazing team and vision for it,” she explained. “Anything like this that’s new … there’s always going to be challenges but I think it’s been the best of the possible situation.”

One of the biggest reasons that Siner is able to stay so positive, she said, is because every person that she works with is just as passionate as herself.

“That creates an interesting and a rewarding work environment,” she said. “And it’s fun seeing some of the things that you’ve been working on come to fruition.

She added it has also been great to work and interact with the students as they enter this new school. “The incoming class of MA and PhD students is a high-caliber group of individuals, with diverse backgrounds and interests,” said Siner, going on to describe the students as coming from countries such as China, Greece, and Saudi Arabia, as well as across the U.S. and from local communities such as Dorchester. “Our upcoming students are passionate and have already accomplished great things, such as volunteering in areas such as Africa, Jamaica, and South Korea, and speak languges such as Serbian, Spanish, Swahili, and more. Their interests range from topics like disability, employment, wounded veterans, and health and wellness, to learning communities, educational access, and gender and sexuality.”

Admissions will open again in Spring 2015 for Master’s students, and in Fall 2014 for PhD students, according to Siner, who said that overall, “I’m really looking forward to the next steps for the school, meeting our incoming classes, and seeing the impact the school and our graduates will have on both local and global communities.” 

For more information about the School contact Siner at Kaitlyn.Siner@umb.edu.

David Hoff of ICI and Laura Owens, Executive Director of APSE, met with a delegation from the Job Coach Network Japan at the 25th annual APSE conference in Long Beach. They discussed the common challenges both the United States and Japan face in advancing employment of people with disabilities, and how the US and Japan can partner on learning from each other and addressing those challenges.

David Hoff – Institute for Community Inclusion
Daisuke Sakai – Kashima Yuaikai Social Welfare Group
Juri Shibata – Yokohama Hiyoshi Employment Support Center
Laura Owens – APSE
Hiroshi Ogawa – Otsuma Women’s University
Wakana Chida – Nagayama Mental Clinic
David Hoff of ICI and Laura Owens, Executive Director of APSE, met with a delegation from the Job Coach Network Japan at the 25th annual APSE conference in Long Beach. They discussed the common challenges both the United States and Japan face in advancing employment of people with disabilities, and how the US and Japan can partner on learning from each other and addressing those challenges.
David Hoff – Institute for Community Inclusion
Daisuke Sakai – Kashima Yuaikai Social Welfare Group
Juri Shibata – Yokohama Hiyoshi Employment Support Center
Laura Owens – APSE
Hiroshi Ogawa – Otsuma Women’s University
Wakana Chida – Nagayama Mental Clinic

ICI Staff Help National Conference Prioritize Inclusion

by Anya Weber

ICI staffers Paula Sotnik and Jason Wheeler recently worked at the National Conference on Volunteering and Service (NCVS) in Atlanta, Georgia. The conference is run by the volunteer organization Points of Light. For the last eight years, the ICI has helped NCVS ensure that this event is inclusive, accessible, and welcoming to all.

NCVS is the largest meeting of service leaders from all walks of life, sectors, races, religions, and political persuasions. These people all unite at this annual event, which focuses on all aspects of the international volunteer service movement.

Wheeler and Sotnik coordinate the Inclusive Events project at the ICI. Inclusive Events supports event planners to make sure that their conferences, presentations, and other happenings are fully accessible and enjoyable for people of all abilities.

This year at NCVS, the ICI staffers conducted pre-event planning, helped with on-site production, and coordinated a post-event follow-up session about access and accommodations for the conference.