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Connections

Equity, Opportunity and Inclusion for People with Disabilities since 1975 Volume 38 w Issue 2 w Spring 2012

New Options: Microenterprises & Customized Employment In This Issue Interviews Introduction: Microenterprise and Customized Employment w Page 8 Jenny Lu Designs w Page 10 Jackie K Bags w Page 12 SCANwithNAN w Page 14 Just for Your CardArt w Page 16 RaceCAR Waterboy LLC w Page 19 Variety of Employment Options w Page 25 Jellen’s House of Fabric LLC w Page 25 The Ultimate Point: OPTIONS w Page 27

2012 TASH Conference Recap and Look Ahead Page 37 Call for Nominations: Editor of RPSD Page 30


TASH offers a number of live and on-demand training opportunities on current topics impacting the disability community. Each training session features leading experts, research and analysis, compelling personal stories and real world examples that participants can use to relate each session to their work or life. Upcoming live training sessions Thursday, June 6 2 p.m. ET

The Star Raft: A New Model for Building Engaged, Creative and Enduring Personal Support Networks David Wetherow, CommunityWorks and Star Raft Press

Thursday, June 13 2 p.m. ET

Restraint and Seclusion in Schools: One State’s Journey to Regulation Lucy Heskins, Kentucky Protection & Advocacy

TBD

Thriving in Transitions: Self Directed Living, It’s Never Too Late! Matthew Medina, Taking Care of Business; Eileen Medina, former Transition Coordinator for the Santa Barbara County Education Office; Richard Rosenberg, Whittier Union High School District Career Connection; Scott Shepard, Avenues Supported Living Services

TBD

Building and Sustaining Our Communities through Time Bank Exchange Joe Donofrio, CHOICESS

http://tash.org/training 2

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Connections Editor

Charles Dukes Editorial Committee

Deborah Taub Elizabeth Fullerton Linda Lengyl Pamela Lamar-Dukes 2011 TASH Board of Directors

David L. Westling, President, Chair, Membership Committee Jean Trainor, Vice President, Chair, Development Committee Carol Quirk, Past President, Chair, Diversity Committee Diane Ryndak, Secretary, Chair, Publications Committee Barbara Loescher, Ex Officio, Treasurer Shirley Rodriguez, Ex Officio, Co-Chair, Chapter Leadership Committee Michael Callahan, Chair, Employment Committee Mary Morningstar, Chair, Education Committee Gail Fanjoy, Chair, Community Living Committee Sharon Lohrmann, Chair, Conference and Training Committees Lisa Mills, Ex Officio, Chair, Public Policy Committee Pat Amos, Ex Officio, Chair, Human Rights Committee Curtina Moreland-Young Ari Ne’eman Betty Williams Micah Fialka-Feldman Bill Smith Lewis Jackson Emily Titon Terri Ward Martin Agran, Ex Officio Charles Dukes, Ex Officio

Volume 38 w Issue 1 w Winter 2012

Table of Contents 4 Letters from TASH

Interviews

8 Introduction: Microenterprise and Customized Employment 10 Jenny Lu Designs 12 Jackie K Bags 14 SCANwithNAN 16 Just for Your CardArt 19 RaceCAR Waterboy LLC 21 Learning Points 25 Variety of Employment Options 25 Jellen’s House of Fabric LLC 27 The Ultimate Point: OPTIONS 29 Call for Nominations: Editor of RPSD 30 Association News 34 Chapter News 36 Thank You Donors 37 Special Feature: TASH Conference Recap and Look Ahead

Contact Us

1001 Connecticut Ave., NW, Suite 235 Washington, DC 20036 Phone: (202) 540-9020 w Fax: (202) 540-9019 info@tash.org w www.tash.org Barbara Trader, Executive Director btrader@tash.org Jonathan Riethmaier, Advocacy Communications Manager jriethmaier@tash.org Haley Kimmet, Program Manager hkimmet@tash.org Amy Feinberg, Operations Manager afeinberg@tash.org To request an alternative format of TASH Connections call (202) 540-9020. Copyright© TASH 2012. No reprints without permission. Permission requests can be faxed to (202) 540-9019.

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Letter from our Executive Director What an inspiring issue of Connections!! To be your own boss! Set your own hours! Do what you love, every day!! Many of us yearn for that opportunity, even though these potential benefits come with responsibilities—and these stories and articles inspire us! We know these opportunities aren’t available to far too many people with disabilities, and we want to change that. TASH has been a passionate proponent of a shared commitment to a working life for all people, and in turn, has been at the forefront of the ideas and strategies that lead to successful employment of and business ownership by people with significant impact of disability.

To that end, we’re involved in an exciting new initiative to bring more opportunity to many more people. TASH is very pleased to be part of a new national training and technical assistance center, funded by the Office of Disability Employment Policy, and led by the National Disability Institute. Known as the LEAD Center (www.leadcenter.org), it is the Leadership for the Employment and Advancement of People with Disabilities Center. As one of many initiatives, the LEAD Center is providing two states, Kansas and Illinois, a unique opportunity to receive intense training and technical assistance from some of the nation’s leading experts on Customized Employment and Self-Employment. TASH, a Collaborative partner of the LEAD Center, will provide this intensive technical assistance and training over a two-year period, in partnership with each state’s Disability Employment Initiative (DEI) grant, operated by their respective Departments of Commerce. Illinois and Kansas have been identified as the first set of states to be offered the opportunity to work with the TASH Collaborative because of their DEI foci on Customized Employment, Self-Employment, partnerships & collaborations, and blending, braiding and leveraging resources. During the two-year initiative, both states will receive intensive technical assistance related to effective cross-system collaboration. In addition, a local workforce development area in each state will be identified to receive training and technical assistance in year one to create capacity to provide Facilitated Small Group Discovery—an effective, best practice, first step in assisting job seekers with disabilities to successfully obtain Customized Employment or Self-Employment opportunities. In year two, these same local workforce development areas will receive additional training and technical assistance to enhance the workforce system’s ability to effectively utilize

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Customized Employment and Self-Employment strategies to improve outcomes for jobseekers with disabilities. The intensive technical assistance provided by the LEAD Center by TASH to the targeted DEI states will enable them Barbara Trader, Executive Director of to build capacity to provide TASH Customized Employment and Self-Employment services in ways that will result in sustainable and coordinated system change. TASH (www.tash.org) is one partner in the LEAD Center that is specifically focused on assisting state workforce systems to develop and implement these strategies. Specifically, TASH will facilitate access to technical assistance that will allow: (a) Customized Employment and Self-Employment services to be brought to scale, including through the use of facilitated small group discovery; and (b) The development or advancement of meaningful and effective working partnerships between the workforce system and other key state systems serving individuals with disabilities, including the Medicaid system. Both of these strategies are expected to: • Significantly enhance the workforce system’s ability to effectively serve job seekers with disabilities; • Provide rare opportunity to simultaneously receive hands-on technical assistance at both policy and practice levels in order to assist state workforce systems to partner with multiple state and local systems and agencies, and leverage resources across systems to provide customized and self-employment assistance; and thus • Contribute to enhancing positive outcomes resulting from existing DEI grant initiatives.

Through the LEAD Center’s collaboration with TASH, a unique group of nationally recognized subject matter experts in the areas of Customized and Self-Employment will be made available to the DEI grantees.

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A Letter from Our Executive Director continued from page 4

These include:

Marc Gold & Associates: Experts in Customized Employment, including through use of Facilitated Small Group Discovery, and Griffin Hammis Associates: Experts in Self-Employment, including through use of Facilitated Small Group Discovery.

TASH is very pleased to have the opportunity to work directly with the general workforce system in both states to help enrich their service capacity for people with significant impact of disability. Please watch for updates through the TASH Blog (www.tash.org) and TASH in Action, and visit www.leadcenter.org for news and project progress!

Lisa A. Mills, PhD: Expert involved in multiple projects with ODEP and NDI, bringing significant knowledge of effective cross-agency collaboration and policy alignment, as well as extensive experience with Medicaid.

About The LEAD Center National Disability Institute (NDI) established the National Center on Leadership for the Employment and Advancement of People with Disabilities (The LEAD Center) through funding from the DOL Office of Disability Employment Policy (www.dol.gov/odep.) The LEAD Center is undertaking a variety of activities, in collaboration with many partners. More information on the LEAD Center can be found at www.leadcenter.org. The National Center on Leadership for the Employment and Economic Advancement of People with Disabilities (LEAD) is a collaborative of disability, workforce and economic empowerment organizations led by National Disability Institute with funding from the U.S. Department of Labor’s Office of Disability Employment Policy, Grant No. #OD-23863-12-75-4-11.

Letter from our President For so many of us, our work is our life, or at least, a significant part of it. When we can fill our time with meaningful workrelated activities on a regular basis, it gives us something to talk about, to think about, and often, to be happy about. Many members of TASH enjoy work related to providing instruction, rehabilitation, and support for people with disabilities, and this brings them fulfillment. But other members of TASH find their primary employment in other areas and are drawn to TASH because of their role as a family member or an advocate. But just about everyone in TASH finds meaning in their life because of the work they do or the passions they pursue. The people described in this issue of Connections are enjoying life largely because of work they are doing. It provides them with an income, but more so, it gives them an opportunity to interact with people in genuine ways and to contribute to the lives of others in one way or another. The customized microenterprises that were developed and operated by the people introduced to you in this issue represent another avenue for people with disabilities to reach a satisfactory quality of life. These enterprises not only provide useful goods and services, but they show that the human qualities of innovation and determination can pay

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multiple dividends for many people, regardless of how they might be viewed by many people in the world. I am happy that TASH’s Connections can serve as an outlet to describe such successful individuals and their business pursuits. Certainly this will help many of our readers to give thought to yet another way that the quality of one’s life can be enhanced.

David L. Westling, Ed.D. President, TASH Board of Directors

Hope you enjoy this issue of Connections.

David Westling President, TASH Board

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A Letter from Our Guest Editor: Mary Pearson When I was teaching school I taught many students with intellectual and multiple disabilities in grades seventh through ninth. At that time, fourteen was the beginning age for transition planning in all states. I had been lucky to obtain a helpful understanding and background of transition and self determination for students with intellectual and multiple disabilities as I became certified. I tried to use these skills, and further research into these topics, to benefit the students and families I worked with. I quickly found that sometimes those with disabilities still encountered assumptions and stereotypes about their abilities, even from those in the education and disability services world. It seemed that many future employment alternatives for those with significant disabilities still consisted of sheltered, segregated work or no options at all. As I began my graduate work and continued teaching, I recall reading some of the outcomes for the populations of students I worked with from the National Longitudinal Transition Study (NLTS) (National Center for Special Education Research, 2005). The results seemed very limited. I talked to some of the high school and post-high teachers who worked with the same population of students, and they mentioned how many students they knew from previous years were matching the statistics from the NLTS. For example, many students seemed to spend huge amounts of time at their parent’s homes, watching television or playing video games. Their employment rates were low, their community involvement rates were lower, and their integrated recreation rates were depressing.

With the assistance of a local supported employment agency and local businesses, I was able to take the students on tours of potential integrated employment options. I tried to expand discussing and educating the students and Mary Pearson, Ph.D families on the many parts of Guest Editor, adult life. All of the students at TASH Connections the general education middle school where I worked had to complete a student educational occupation plan with their parents at some point during their years at the school. After consulting with some other special educators, I adapted part of the typical student education occupation plan to better fit the needs of the students and families with which I worked most closely. I designed a double interview process. I would sit down with the student, prior to their Individualized Education Plan Meeting (IEP), where typically the student education occupation

While discovering these anecdotal findings as I was working on my master’s degree and teaching, I began to find that there were other options for students with intellectual and multiple disabilities than segregated options. This seemed to especially be true if transition planning began early, if person centered planning was utilized, and if a variety of employment options were not only available, but chosen via a self-directed process (President’s Commission on Excellence in Special Education, 2002). I decided to embrace this process with the students I was working with at the time, and designed a beginning way to introduce some person centered planning and options to the students and their families. I especially wanted to help the families begin to learn about options, both those available currently in their communities, and ideas that could be expanded upon beyond those current options.

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Example of Prompts for Double Interview to Introduce Transition Topics at IEP

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A Letter from Our Guest Editor continued from page 6

plan was completed, and would interview them, asking questions such as what kind of transportation did they use now, and what kind did they Sample poster of picture based person want to use centered interview in the future? What did they do now for work (typically what chores did they do at home), and what might they be interested in later? Whom did they live with now? Whom did they want to live with later? I created a simple table (see example) that prompted the questions, with one side for answers about what was happening now, and one side for comments about what was preferred for later. I also sent a copy of the interview home to the parents with an explanation page telling the parents about the interview process. The parents were to complete the interview prior to the IEP meeting, and bring it with for us to compare and discuss the results at the meeting. I noticed the results very quickly with the students and the parents. In the IEP meeting, as part of the student education occupational plan, we would compare the two interviews so that both the student and parents had a voice in this beginning, or introductory, process. For students who had very low verbal communication skills, or those who had a harder time with a verbal only interview, I began using pictures. I would lay out picture options, and the student and I would work together to narrow down the options of their preferences in the specific areas. I did adapt the interview process for a few students, narrowing down the questions to focus specially on home, recreation, and employment. Then, we created posters with the pictures on the posters for the students to show at the IEP meeting, or, if preferred, the students and I used the pictures to create a dictated interview (where the pictures were used as visual cues for the answers to the interview questions). Many parents and students

seemed to enjoy the process. Many parents mentioned that this was a good way to introduce some of these topics to them, and got many of them thinking about options, ideas, and areas that would need to be addressed in their student’s future. The students seemed to be excited to share their answers, and talk about their desires for the future. I also observed that this process seemed to open up a great opportunity to discuss needs and wants with the students, and help them begin to gain a better understanding of both. Throughout the process of researching about microenterprises and customized employment for this edition of TASH Connections, I have been struck by the amount of options both of these employment processes provide for people with disabilities. Conducting these interviews have reminded me of the joy and freedom my students and their families seemed to begin to experience as we worked together on initial exploration for the student’s transition to adulthood. Although very early in their educations, just this little taste of a person centered process seemed to open minds and promote personal autonomy. While conducting the interviews for this edition, I was also struck with the issues of options: that many people with disabilities continue to face a world where their options are limited, often because of the lack of imagination and open-mindedness of those whom are supposed to be their greatest supporters. Although disheartening, I recognized how much of this lack of imagination and open-mindedness stems from a lack of education and understanding, which is the ultimate point of both the work I did with students and families while I was teaching, and this edition of TASH Connections. I hope that readers will find intriguing ideas and options discussed throughout this edition, and come to understand better the need for expanded employment and person centered options for those with disabilities, as microenterprises and customized employment processes can be for some with disabilities. Mary Pearson, Ph.D.

References National Center for Special Education Research, 2005. National Longitudinal Transition Study. Retrieved from http://www.nlts2.org/ National Center for Special Education Research, 2012. National Longitudinal Transition Study Wave 2. Retrieved from http://www.nlts2.org/ President’s Commission on Excellence in Special Education, 2002. A NEW ERA: Revitalizing Special Education for Children and their Families. Retrieved from http://www2.ed.gov/inits/commissionsboards/whspecialeducation/reports/pcesefinalreport.pdf

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Interviews All interviews conducted by Mary Pearson, Ph.D

Introduction: Microenterprise and Customized Employment Mary Pearson, Ph.D.

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ccurate rates of employment for those with disabilities in the United States continue to be difficult to obtain. Recent estimates suggest an average of 25% of all adults with disabilities is regularly employed, with an average of 22% for individuals with intellectual disabilities (Griffin Hammis LLC, 2012, slide 4). Those with other disabilities, such as traumatic brain injury, have a slightly higher rate, while those with mental illness typically have a lower employment rate (2012).For 1-2% of the population with the lowest intellectual functioning, meaningful educational planning has taxed the thinking of families and

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professionals since the school doors were first ordered open. As a field we’ve seen the best and the worst from professionals responsible for educating these students. Historically, some professionals argued against any effort to even teach this population, using courts and professional writings to create a disparaging folklore that these individuals were not even educable (see Scheerenberger, 1983). Other professionals took a different tack, interspersing research, advocacy, and legal challenges to demonstrate the robust gains that could be made when superior teaching was provided in typical, everyday life routines.

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Interviews Plastics, Standards, and the Need to Return to Individualized Planning continued from page 8

These statistics indicate that a variety of inclusive, integrated and competitive employment options continue to be difficult to obtain for many with a range of disabilities. This may especially be true for those with multiple disabilities. Since the 1990’s self-employment has emerged as a viable option for employing people with a range of different disabilities including individuals with severe disabilities (Walls, Dowler, Cordingly, Orslen, & Greer, 2001). These options appear to be most successful when customized employment processes are used to match the preferences of the worker with paid work projects. The US Department of Housing and Human Development (2002) defined a microenterprise as a “sole proprietorship, partnership, or family business with five or fewer employees, which requires $25,000 or less in startup capital, and which [typically] does not have access to the traditional commercial banking sector”. The Aspen Institute (2011) stated that there are approximately 20 million microenterprises in the United States, and many in the microenterprise industry are from populations with a history of exclusion from owning small businesses including women, minorities, low-income people, and individuals with disabilities. The Institute conducted a study in 2009, focused on organizations providing direct support services to those owning and running microenterprises, and identified 696 microenterprise assistance programs throughout the United States (2009a & b). Of all of these programs, an average of 5% provided assistance to individuals with disabilities (The Aspen Institute, 2009a). These statistics display the need for increased training and assistance for those in the disability support communities on microenterprise as a viable employment option, especially as a means of customized employment for those with significant disabilities. Customized Employment, as defined by the US. Dept. of Labor, Office of Disability Employment Policy (2007) is: “…a flexible blend of strategies, services, and supports designed to increase employment options for job seekers with complex needs through the voluntary negotiation of the employment relationship with an employer. The job seeker is the primary source of information and drives the process. The Customized Employment process begins with an exploration phase that lays the foundation for employment planning. Planning results in a blueprint for the job search.” (US Dept. of Labor, Office of Disability Employment Policy, 2007. Customized Employment para. 1)

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Customized Employment utilizes an exploration and discovery process, which leads to customized planning and employer negotiations or job carving, development, and creation. Because of the person-centered focus of Customized Employment, it is a process where the person with a disability can explore the possibilities and potential of a microenterprise, and initiate the beginning steps of creation during the negotiation phase of the customized employment process. Although both microenterprises and customized employment are options for potential employment for many with varying disabilities, and these options and processes have been known of and utilized for many years, they are often foreign ideas to those in the disability support community, the education and special education fields, and to individuals with disabilities and their families. This edition of TASH Connections has been dedicated to spotlighting microenterprise owners and disseminating further information about microenterprises and customized employment options to assist in expanding the knowledge about these employment options to readers.

Interviews The following interviews and articles are dedicated to displaying successful microenterprises, many which were created utilizing a customized employment process. Each interview discusses different methods the microenterprise and business owners used to create individual employment via creative means. Within many of the articles the owners described their successes and difficulties in running a microenterprise or business. Each interview was completed either in person, over the phone, via e-mail, or a combination of those methods... The final article summarizes discovery points each microenterprise owner and interview participant discussed. It also summarizes and includes information gained through interviews with those support team members who have provided some of the owners support. It also includes a summary of valuable input from Cary Griffin, a specialist in the field of self-employment for people with disabilities, and information about some employment ideas closely related to microenterprises and customized employment.

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Interviews Plastics, Standards, and the Need to Return to Individualized Planning continued from page 9

References Griffin Hammis, LLC. (2012) Businesses by Number of Employees Powerpoint. Shared by Cary Griffin, March 12, 2012. National Center on Workforce and Disability/Adult. (2007) Customized employment employers and workers: Creating a competitive edge. Summary Report on Customized Employment Grants and Workforce Action Grants Funded by the U.S. Department of Labor, Office of Disability Employment Policy. Retrieved from http://www.dol.gov/odep/topics/CustomizedEmployment.htm The Aspen Institute. (2009a) 2008 Data. Retrieved from http://fieldus.org/MicroTest/FY08PerformanceOverview.pdf The Aspen Institute. (2009b) U.S. Microenterprise Census Highlight FY 2008 Data. Retrieved from http://fieldus.org/Publications/HighlightsFY2008.pdf The Aspen Institute. (2011) Fast Facts & Highlights. FIELD at the Aspen Institute. Retrieved from http://fieldus.org/Stories/FastFacts.html US Department of Housing and Human Development. (2002) Microenterprise development. 2002 Regional Technical Assistance Workshop. Retrieved from http://www.hud.gov/offices/hsg/mfh/nnw/micro.pdf Walls, R., Dowler, D., Cordingly, K., Orslene, L., & Greer J. (2001) Microenterprising and people with disabilities: Strategies for success and failure – statistical data included. Journal of Rehabilitation. April-June 2001 edition. Retrieved from http://findarticles.com/p/articles/mi_m0825/is_2_67/ ai_76398486/pg_2/

Jenny Lu Designs

Interviewer: Mary Pearson, Ph.D. Interviewees: Jenny Unrein and Wendi A. Unrein

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he following account of how a mother and daughter established a microenterprise is based on interviews and direct observation. Jenny and her step-mother Wendi discussed the microenterprise, Jenny Lu Designs, on the phone, and also allowed the interviewer to attend a conference where Jenny sold her art pieces. The author then wrote up the interview and conference experience, and e-mailed it to Jenny and Wendi for them to add any further details, and approve the interview. Everything started about four years ago, when Jenny was still in school. Jenny watched an episode of Oprah, who was interviewing two girls with cancer. Jenny was inspired: she wanted to do something, like Oprah, to help those with cancer. Jenny already loved to draw. She drew wonderful pictures, so Wendi, Jenny’s step-mother, suggested that she draw some more pictures. Jenny would draw the pictures, and Wendi would fill them in with color. Jenny began to take the artwork to school, and the teachers at her high school loved them. Many of them started to buy the art, which meant Jenny had some money she

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could donate toward charities for cancer. Jenny and Wendi then took the pictures and showed Jenny’s high school transition coordinator. He thought the art was great, and suggested that Jenny apply for a grant from the state of Kansas to start her own microenterprise. So, Jenny and Wendi started finding out more about how to write a business plan, with some help from the transition coordinator. They also applied for a grant from the Kansas Disability Council, and continued to sell Jenny’s art, as the popularity of her art began to grow via word of mouth, especially through the teachers at her high school. Although Jenny was not awarded the grant, her business, Jenny Lu Designs continued to grow, especially since one particularly supportive member of the Kansas Disability Council suggested they talk to someone at Vocational Rehabilitation in order to get some support to build Jenny’s business. Wendi, Jenny’s stepmother admitted it has not always been easy to assist Jenny with Jenny Lu Designs, and sometimes they both have felt like they have had to beg for assistance. Jenny’s Vocational Rehabilitation

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Interviews Jenny Lu Designs continued from page 10

counselor has been supportive assisting them to get a computer, printer, supplies, and turn Jenny’s art from just wall art into other forms such as T-shirts, necklaces, cards, earrings, key chains, magnets, and other formats. Jenny has also been able to continue her goal of helping others through her business, especially by donating art to be sold or auctioned for causes she believes in such as the William’s Syndrome Association, the Lawrence Kansas Center for Women, and causes raising money for people with cancer. Jenny has a goal of donating art to assist St. Jude’s Hospital in the future. As Jenny said in our interview, “I want to make a difference!” Jenny and Wendi have not always known all of the steps for creating Jenny Lu Designs. Wendi mentioned how often Jenny and she have had to persevere without a clue as to where they were going with the microenterprise, and then opportunities have often just occurred, and the two just ran with them. For example, Jenny has found a niche for her business, especially when selling at conferences for people with special needs. They have worked hard to ensure that Jenny does not limit her customer base, and so have had to stretch her business reach, include traveling to conferences in several States. Jenny also sells at some local art shows and an art gallery. She has also expanded to on-line sales, and has received orders from Africa, Germany, Europe, Canada, Mexico, South America, New Zealand, and Australia. Jenny loves to help at activities like the Heart Ball, where she can help with her art. Interestingly, Jenny and Wendi have found that Jenny’s art always sells better when Jenny is there. Jenny loves interacting and socializing with others, and has found her microenterprise to be a great way to make new friends. She can’t seem to go anywhere in town now without knowing someone because of Jenny Lu Designs. Jenny especially enjoys meeting people like Secretary of the US Department of Health and Human Services, Kathleen Sebelius, whom she was able to meet when Wendi and Jenny were invited to the White House in Washington D.C. They were able to present Secretary Sebelius with a piece of Jenny’s art. Jenny has a goal to meet Oprah someday as well. Jenny and Wendi are also looking toward Jenny’s future. Wendi is trying to ensure that Jenny is able to grow her microenterprise without causing problems with the Social Security support Jenny

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Jenny Lu Designs Website: http://jennyludesigns.com

also needs. Wendi

View a 20 second video of Jenny selling at a conference in spring 2012 discussed how Jenny has needed a large support system to create and continue her microenterprise. Jenny and she continue to weigh future options carefully, as they have found that some people will offer ideas, without always being willing to take true action. Jenny continues to do on-line research on her free time related to her microenterprise, as well as other areas of interest such as helping others. Jenny also wants her life to be more than her microenterprise, so she spends time each week volunteering as a teacher’s assistant at a local elementary school. Jenny stated that “people understand and get me if I’m there, and they love me.” In the interview, she and Wendi both discussed how running Jenny Lu Designs continued to expand Jenny’s community. Selling art has helped her meet and make friends, and she truly loves that part of her business. Although Jenny is involved in some disability related groups like the local William’s Syndrome Group, her microenterprise has provided a major part of her social connections. Although there have been ups and downs when running a microenterprise, neither Jenny nor Wendi would change any of it. Wendi stated that it would be great if transition teachers and other special educators were better educated about options such as microenterprises, and if it could become a more recognized option within other community support organizations such as those for people with developmental disabilities, Social Security, and so forth. She also stated that running a microenterprise takes a lot of determination, investment, and work. But both Jenny and Wendi stated numerous times that Jenny loves her microenterprise, Wendi loves supporting Jenny with her business, and they love when others are excited about Jenny’s work.

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Interviews

Jackie K Bags Interviewer: Mary Pearson, Ph.D.

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ackie and her mother and family invited the author to two conferences where Jackie was selling her bags for her microenterprise, Jackie K Bags. Jackie’s interview was held in person, so that Jackie could be fully involved in the interviews, as well as her mother, with comments added by her siblings and father. The author also observed Jackie selling her bags at these conferences. The author then wrote up the interview and conference experiences, and e-mailed it to Jackie and her mother, Sherry, for them to add any further details, and approve the interview. Jackie smiles, laughs, and clicks her tongue while she, her mother, and I completed our interview. These, including some other noises and a very few words (yeah, bye, and a couple of others), are how Jackie communicates. She also uses a Dynovox, hitting the switch with her head. As we talk, our conversation focused at times on people’s initial assumptions when they see Jackie. Unfortunately, Jackie and her mother feel they have encountered many professionals in the disability world who took one look at Jackie and immediately assumed that she would never be able to have a job, not be able to have a microenterprise, and that there were very few, if any options for Jackie’s future. But, Jackie and her mother—and luckily a few other professionals, were determined to prove those with assumptions wrong! Jackie began the process toward her microenterprise, Jackie K Bags (http://site.jackiekbags.com/), while she was still in school. During her post-high school years Jackie had a transition coordinator and teacher who saw potential in Jackie’s abilities to use switches with her hands or head. Although much of her physical abilities are very affected by cerebral palsy, Jackie and her mother knew she was capable and had potential to work. Jackie used switches at school to run blenders and other small machines like a shredder. Jackie began using switches to run a sewing machine. The transition teacher decided to have Jackie

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and some of the other students with disabilities make some items for the teenage-mothers in their school. Jackie seemed to enjoy using her switch with the sewing machine, but Jackie especially enjoyed presenting the teenage mothers with the bags and Jackie with her Young Entrepreneur other items the Award, Conference Spring 2012 students had made for them. Jackie’s teachers had noticed in the past that she especially enjoyed any time that she was with her peers without disabilities—but Jackie really seemed to enjoy presenting something she had made, and interacting with her peers at the same time. So, Jackie and her mother, Sherry, started making bags, mainly using placemats for fabric, as a hobby. With some family assistance, they created a website to try to sell Jackie’s bags. Jackie seemed to like being involved with all the steps of making the bags, from shopping to choose the fabric, to using her switch to run the machine, and especially seemed to love selling the bags at craft shows, which gave her the opportunity to socialize and interact with others. Because Jackie’s disability also includes sensory issues with vision and hearing, and Jackie was still 21, Jackie and Sherry were offered the opportunity to take part in an effort through the Kansas Deaf Blind Project to facilitate customized employment opportunities for older teenagers and young adults with sensory impairments and other disabilities. This is when the author met Jackie. The author was hired by the Kansas Deaf Blind Project Team as a consultant, to work through a customized employment

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Interviews Jackie K Bags continued from page 12

process with Jackie, Sherry, and her family. She was able to visit with Jackie and her family in their home, learn about Jackie, her family, and her individual strengths, talents, and needs. She got to observe Jackie involved in all of the processes of making Jackie K Bags, spoke with Jackie’s former transition teachers, and helped to articulate, through a vocational profile of Jackie and a PowerPoint, Jackie’s strengths, abilities, and employment needs. The Kansas Deaf Blind Project Team included the author [Mary Pearson], Jon Harding (currently the Network Liaison, National Consortium on Deaf-Blindness), Beth Jordan (currently the Great Plains Regional Representative, Helen Keller National Center), Megan Cote (currently the coordinator, Kansas DeafBlind Project), Jackie’s parents, and her siblings. The team met and created a plan that was revisited more than once about how to seek future customized employment opportunities for Jackie. They also discussed how to move forward with the idea of a microenterprise, and members began to assist with writing a business plan and other components of the microenterprise. With the support of team members, Jackie and her mother started seeking support from Vocational Rehabilitation and the Developmental Disability services for the county they lived in. They did find limited support, especially through Vocational Rehabilitation. When Jackie, Sherry, and the author met, it had been nearly two years since they had seen each other. In a separate interview, Jon Harding stated that Jackie and her microenterprise had become “rock stars”. Jackie and her business had begun to take off. She received a Dynovox and selling racks through Vocational Rehabilitation, which she now uses at the conferences and shows. Jackie’s flair for design has continued, as she and her mother have made choices in fabric, bag design, and accessories for the bags to expand her inventory. Unfortunately, some of the original support from Vocational Rehabilitation has not been followed up on, as funding and staff changes have occurred over the last two years, but Jackie has increased her profit enough from the bags to be able to purchase an embroidery machine, new sewing machines, and an Ipad to assist with credit card purchases. Jackie has made friends when selling her bags, and her bags have become very popular in some circles. Her on-line sales have also increased, including a recent request for Jackie to design and assist in making personalized bags for a bride’s attendants. The microenterprise continues to grow and expand, so much so that Sherry, her mother, discussed how demand is outgrowing the family’s abilities right now. She talked about feeling like they are

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Jackie K Bags Website: http://site.jackiekbags.com on the edge of needing to expand the business beyond its basic

View a video of Jackie

beginnings in their home, but are still at the point of needing more profit in order to do so. Jackie recently was awarded the Young Entrepreneur Award for the State of Kansas, and was invited to travel to Virginia this March to both speak and sell at a transition conference. One thing discussed often during the interview was about how Jackie communicates her desires and enjoyment for her microenterprise. As Jackie’s verbal communication is limited, much of her communication is through her behavior. One observation her mother has made over the last two years is that Jackie is very excited, laughing, and seems extremely happy whenever she is making bags, hearing machines used to make bags, and especially when she is selling at conferences. Her mother reported that on a drive to a conference Jackie seemed to get more and more excited while in the van, and then after the conference often yelled in the van, what the family describes as her “complaining” yell. The same is true when she is at home and her machines aren’t making noise during her normal work times. When discussing microenterprises and customized employment as an option with Sherry and Jackie, Sherry explained how, when Jackie was in high and post high school, these options were not even discussed. Luckily, Jackie had a transition teacher who was supportive of her building her switch-using skills, but Sherry mentioned that she felt that transition and high school special educators (and other high school professionals) need to be better trained in these options, especially for students with more significant physical and intellectual disabilities. She discussed (and Jackie was observed with a frown often when discussing this) encountering negative responses from professionals when she attempted to gain services or ideas for Jackie’s future since middle school, except from her high school transition teachers, the Kansas Deaf Blind Project Team, and one counselor at Vocational Rehabilitation.

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Interviews Jackie K Bags continued from page 13

Sherry talked about how professionals need to listen more and be open to different individual options for each person. We discussed how her family attempted earlier in Jackie’s education to see if Jackie would want to live outside of the home, with weekend respite visits. Jackie would get despondent and depressed. So, after talking about the options with Jackie, the family decided that Jackie would live at home with her family caring for her. Sherry discussed how they often encountered resistance to this idea from professionals, which was frustrating. Sherry discussed that they can still encounter resistance from some professionals when they observe Jackie and her excitement for her microenterprise. Others provide lots of suggestions, but no real answers nor support (especially financially). She discussed also, that some professional organizations offered only to provide assistance if they can claim credit for Jackie’s success, when they really have no right to that claim. Sherry especially wanted to emphasize that, thus far, other than the very limited amount of help Jackie received from Vocational Rehabilitation, Jackie’s microenterprise has been completely self-funded, with no government support. Although some support has been sought after, such as to learn about a PASS plan, follow through from those supposed to providing assistance has been very difficult to obtain. Sherry emphasized that what is needed in order to create a successful microenterprise is a support team who really listens and takes the time to provide the amount of support needed for

someone like Jackie. That is what the Kansas Deaf Blind Project Team provided. Jackie and Sherry still contact team members when needing sounding boards or brainstorming assistance. Sherry discussed her concern for recent budget cuts in Kansas and other states, and how much these cuts affect people like Jackie, and their support team members, including their parents and family members. We discussed how Individualized Education Plan Team Members (IEP team members ), as early as middle school, need to know about customized employment and microenterprise options, and inform those with disabilities and their families about all options, rather than just a few that seem to pigeon hole those with disabilities, like Jackie, into segregated lives away from those without disabilities. Jackie recently was able to present at the MidAmerican Nazarene College in Olathe KS, speaking to students close to graduation, which she really enjoyed. Sherry could see through this presentation Jackie’s potential to inspire others to keep their minds open to the potential that a person like Jackie has, especially when she is supported in creating a microenterprise with skills and job components she enjoys. As Sherry put it “other families with adult children with disabilities need to know that we’re not any more energetic than them. We’re just an ordinary family, who happens to have a member who is very bossy! And we’re grateful she is!” Jackie’s response to this statement was a very large, loud laugh!

SCANwithNAN

Interviewer: Mary Pearson, Ph.D. Interviewees: Nandi Isaac and Nalini Isaac

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andi’s interview was held over the phone with Nandi and her mother, Nalini, about Nandi’s microenterprise, SCANwithNAN. Although Nandi answered the majority of the questions, Nalini was available for further explanation if needed. The author then wrote up the interview and e-mailed it to Nandi and her mother for them to add or change any information, and approve the interview.

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A couple years ago, Nandi Isaac (SCANwithNAN), had been working at a restaurant after graduating from the Georgia Academy Nandi scanning for the Blind. During this time, Nandi had become interested in photography, joining a photo club. Then, a large tornado ripped through her town, and Nandi noticed that many people were very upset because they had lost their precious photos, albums, scrapbooks, and documents. She realized that

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homes can be rebuilt, but keepsake photos and document often cannot be re-created. Nandi and her parents realized that Nandi really had an interest in saving people’s memories, and Nandi started learning how to scan and save items onto the computer. She worked to learn how to do this, mainly using scanners at Walmart and Walgreens that often broke down. Nandi and her family decided that Nandi could do this for a job, so the family decided to purchase a scanner and CD writer. A friend of the family trained Nandi how to use the equipment. Nandi began to scan a lot of pictures and documents for family and friends in order to practice her new skills. Soon, Nandi felt comfortable in her skills, and she began to receive support from her job coach from ARC (Advocacy Resource Center) of Macon. She also received some support from Employment First Georgia, a statewide nonprofit organization which helps people with disabilities to find and support them in preferable jobs based on person centered planning. Through Employment First Georgia, an expert in employment became a consultant who has supported Nandi in the formation and business aspects of SCANwithNAN. The consultant, Dr. Ruthie Beckwith has been instrumental in the creation of micro-boards in Georgia. Nandi and her mother and father have participated in some training that was helpful about creating small businesses. Nandi officially got her business license and tax ID in April of 2010, and has found ways to market her business especially at clubs and conferences, such as the Pilot Club, Anchor of Hope and the Federated Garden Club in Macon. Some have asked that she and her mother give presentations about her business. Nandi was thrilled in April of 2010 to also receive her first order and check! Bob, her job coach, has assisted Nandi in creating marketing plans, and she and her mother feel the business has grown, in part, because of his assistance.

SCANwithNAN on Facebook View a video that Employment First Georgia did with Nandi and her mother

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While

talking with Nandi, she emphasized to me that scanning pictures and making customers happy are some of her favorite parts of her microenterprise. She loves saving customer’s Nandi at Conference advertising SCANwithNAN memories. Nandi feels she is a peopleperson, and likes interacting with people, her parents and job coach have helped her learn what to say, how to promote her business, and how to increase the job requests she receives. She feels Nandi displaying her business that many in the license community, such as the Federated Garden Club in Macon, have been very supportive of her business. She has received orders after displaying her business at different club meetings. Nandi says “I want everyone to come and take the time to look through and talk to me about the business. I like having my own business. I like making my own money, and I enjoy what I do.” Nandi and her mother also spoke to me about some of the support needs that they have had in the past, and continue to need. Most of the equipment they have purchased for the business is equipment the family owns. They currently are seeking assistance from Vocational Rehabilitation for equipment such as an efficient scanner and software that they need in order to continue expanding the business, although assistance has been slow and hard to come by. Nandi feels supported by the ARC of Macon and her job coach, but she and the family need further assistance with helping Nandi close sales, further marketing plans, book-keeping, budgeting, record keeping, tax filing, and

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removing photos from old albums where the pictures may be stuck. They are exploring to try to find assistance in these areas, but again, support has been hard to obtain. Both Nandi and her mother concurred that, although they have received some great support, there are some in the disability support community who have very little knowledge about microenterprises, or offer very little assistance. They sometimes have had very limited flexibility, and open-mindedness toward Nandi and her microenterprise.

Overall, Nandi is very excited with the growth of her business, and the opportunities she has had to teach others about it through presentations. She and her mother are excited about the future, and hope that they can network with other microenterprise owners and supporters in the future!

Just For You CardArt

Interviewer: Mary Pearson, Ph.D. Interviewees: Jenna and Denise Quigley, Donna and Rita

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he interview of Donna and Jenna of Just for You CardArt occurred over the phone, with Rita, Donna’s mother available for clarification if needed. Denise, Jenna’s mother was also available if needed. Before the interview Denise sent brochures and other information to the author for details on how the microenterprise was originally created. The author then wrote up the interview and e-mailed it to Jenna, Donna, Denise, and Rita to add and change any information, and approve the interview. Jenna and Donna have been friends for years. They have always enjoyed doing many activities together, and hung out a lot together while they were both in school. They started their card business, Just for You CardArt, because they used to spend so much time together. Donna’s mother, Rita, used to make cards using paper and stamps and other craft supplies. Sometimes, when Rita was making her cards, the girls would want to help, so Rita would give them their own cards to work on. Denise, Jenna’s mother, used to tell Rita how great her cards were, and that she should go into business selling them. With this encouragement the girls decided that they would start their own business, selling THEIR cards, which is how Just for You CardArt began. Both girls were still in high school when they launched this microenterprise. The ladies and their parents felt that the

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Donna and Jenna – best friends and business partners

community employment options were lacking in the area, so the microenterprise could be a good employment alternative. Both ladies have continued with their education, training, and volunteering, and other activities, as well as running their microenterprise. Having their own greeting card business is exciting to the girls, and they enjoy talking about it with others at conferences, in interviews, and Jenna has introduced herself and talked about the cards to the artist-owner of a local art gallery. Some of their successes have included selling over 300 cards at the National Down Syndrome Congress Conference in 2010, receiving nearly 150 custom holiday orders through the 2011 TASH Conference, filling an order for 200 holiday cards for an insurance company that works on special-needs trusts, and they have completed customized wedding invitations for several brides including one bride whose first born has Down syndrome, and another bride who works with Casey’s Cookies, a non-profit business out of Florida. Both brides knew that the cards would be unique and beautiful, but very individual. The girls have also added new cards for customers, including get well cards, cards

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Interviews Just for You CardArt continued from page 16

for congratulations, and sympathy cards on requests from their patrons. One summer their cards were displayed at an art gallery. The cards are sold for $4, with $3 going to the business, and $1 being donated to the National Down Syndrome Congress. Initially they began making and selling cards, finding a niche selling at conferences, through some local business connections and their web pages. When Donna’s family moved to another state new problems had to be solved. Now the first step of the process for making the cards involves Rita creating an initial design idea which is given to the girls for approval. The girls have full artistic license, and decide if they like the idea, if they want to add or change anything (which often occurs), and final approval of the cards. Rita then assists with cutting the paper. Donna stamps the cards, and then mails them to Jenna. Jenna colors them, puts them together, and helps to mail them out to complete the card orders. The whole process is self-designed to meet each girl’s individual ability strengths. Both business owners are also very involved in the advertising and selling process at conferences and through their website. Right now Donna reports that her favorite card is the “cupcake card.” Jenna’s favorites are all of the birthday cards. Along with their microenterprise, both young women are involved in many other activities as well. Jenna is currently in high school. Through school she works with a job coach at Special Olympics Georgia, doing filing and miscellaneous office work once a week, and twice a week at a local preschool helping the children and teachers as needed. Jenna enjoys being involved in Special Olympics and loves to sing and dance. Donna has graduated from high school and is living in a new state. She volunteers three days a week at a free clinic where she works at the front desk. She collates papers, shreds, straightens the library, runs errands, and other activities, and is very well liked by those at the clinic. Both young women have grown in confidence and abilities as they have owned their microenterprise, including communicating with possible customers or people interested in their greeting-cards and how they are made. They both show a great deal of pride in their work and as the microenterprise has grown!

Just for You CardArt display at the “Market.” In October 2012 Just for You CardArt was invited to display and sell cards at The Arc’s 2012 National Convention and International Forum in Washington DC.

Jenna at Painted Fish. Jenna is standing in front of the Just for You CardArt display at the Painted Fish Art Gallery (the cards are displayed and sold at the art gallery).

Just for You CardArt Website: www.justforyoucardart.com

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Articles from our Contributors

The annual TASH Conference is the educational, networking and advocacy event of the year for parents, self-advocates and professionals in the disability field. Each year, more than a thousand attendees come together at the TASH Conference to share innovative ideas, ground breaking research and learn effective strategies for supporting equity, independence and opportunity in the lives of people with significant disabilities. You’re invited to Learn, Share and Grow during the 2013 TASH Conference in Chicago, Ill. • • • •

More than 200 sessions and workshops Opportunities to network with other parents, professionals and self-advocates Practical skills to implement immediately Engaging and inspiring keynote speakers

http://tash.org/2013tash

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Interviews

RaceCAR Waterboy, LLC Interviewer: Mary Pearson, Ph.D. Interviewee: David Taylor, Jr.

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avid Taylor preferred that his interview be done via electronic means. The author created a list of interview questions and e-mailed them to David. He then wrote his answers and sent them back. The author then wrote up the article about David and his microenterprise, and sent it via e-mail to David to make any changes or add any details, and approve the article. Although David Taylor, Jr. has gone through a long and hard process in creating his microenterprise, RaceCAR Waterboy, LLC, David describes microenterprise as “customized self-employment that takes your dreams and turns them into a business of your choice”. David’s business has grown from a vending business selling bottled water at small events, to obtaining a third party vendor-ship with NASCAR and Coca Cola to sell Dasani water at NASCAR races. David’s business has also expanded to embrace his authorship of two books, “Microenterprise 25 Step Business Plan” (a workbook) and “How to Buy a House on Section 8” that have been purchased throughout the world. (These are available for ordering through David’s website (http://racecarwaterboy. homestead.com/services.html). His business has also expanded to include him as a keynote speaker at conferences throughout the country. One of the main messages David wants to spread about creating and running a microenterprise is, “Don’t take NO as an answer!” The process David went through to create his microenterprise involved much self-advocacy. It began with training about microenterprises with the North Carolina Council on Developmental Disabilities that he had his mother attend, as he was working at a different job with NASCAR. After the training, David tried working with the Vocational Rehabilitation in his area, which initially resulted in a referral to his local community college small business center. David found that the people at the small business center were nice, but had very little understanding of people with disabilities. David completed his first business plan with the small business center, but Vocational Rehabilitation (VR) turned him down. He found that VR’s customary way of

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assessing clients at intake functioned as a gate keeping tool and, in David’s case; the gate was closed to him. One counselor, in particular, seemed adamantly against David and microenterprises, refusing to provide minimum accommodations to a David at speaking engagement required assessment, the 5 Essential Functions Vocational Rehabilitation (VR) assessment with David. He appealed VR’s decision, which he won. VR then had to obtain an assessment from a different, more flexible assessment group, providing appropriate accommodations, and assessing him for skills directly connected to the type of microenterprise he was proposing. David also requested and obtained a new VR counselor, who was a Regional Officer of VR, and was much more supportive of David’s microenterprise. David listed many people who have been supportive of his microenterprise, although much of their support was obtained after David advocated for education and change within the systems set up for people with disabilities. David has multiple disabilities including cerebral palsy, seizures, hydrocephalus, traumatic brain injury, and a hearing and speech disorder. Much of his self-advocacy has been related to training those in the disability support field and the small business ownership field how to support and work with his skills and disabilities. Some of those who were supportive included the community college small business center David initially worked with, individuals David worked with at Vocational Rehabilitation after his initial appeal, his support brokers with the ARC, and members of the North Carolina Developmental Disabilities Council who assisted him in getting training, supported employment, and expanding his business plan to include authorship and keynote speaking. David

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Interviews RaceCAR Waterboy continued from page 19

also mentioned that the second evaluation company that VR worked with wrote up three amazing reports about how he could do the job of his microenterprise with simple accommodations. David stated he has obtained the most support from the Circle of Business Friends (COBF). They have provided support throughout the whole microenterprise creation process, and also provide assistance with parts of his microenterprise David is not able to do including bookkeeping, tax preparation, legal assistance, marketing, and business management. Finally, David stated he received assistance from the ARC of North Carolina who had a man who provided information and assistance in writing a PASS Plan, which his regional Social Security office approved. PASS stands for Plan to Achieve Self Support, a funding mechanism which can provide Social Security funds to help a recipient start a business.

Business photo

Unfortunately, not everyone was supportive of David, especially initially. David discussed encountering people like the initial VR counselor and the original assessment evaluators who were closedminded and not flexible when initially evaluating David’s skills. He stated that he certainly ran into those people in the disability support systems who believed that people with disabilities could not own their own microenterprises, nor successfully run their own small business. This is why David’s advice for others interested in creating their own microenterprise includes not listening to people who try to shut down your dreams. He discussed that others interested need to keep advocating for people to “think outside of the BOX”—to think of “life in the real world” and “go for it!” David is happy to help those interested in microenterprise, especially with his book. He has gathered information about support in different states throughout his travels, and supportive people such as Commissioner Rutledge of the VR office in Washington, which he is willing to share. David can be contacted through his website listed above. David emphasizes never giving up, even when encountering problems. He is looking into expanding his business to take on the ICE business at some

At NASCAR

NASCAR events, but he also is just taking life one day at time. David emphasizes, “No one would have thought this life I have would have happened”, and David sees his future as bright, and that dreams can come true, especially when you advocate for them.

RaceCAR Waterboy’s Website: racecarwaterboy.homestead.com

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Interviews

Learning Points

Interviewer: Mary Pearson, Ph.D. Interviewees: Cary Griffin, Griffin-Hammis Associates, LLC Bob Puryear, Job Coach, Advocacy Resource Center [ARC] of Macon GA Shelly May, Grants Manager for the Kansas Council on Developmental Disabilities Jon Harding, Beth Jordan, and Megan Cote, Members of Jackie Kopaska’s CE Support Team

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nterviews of different support team members were conducted both over the phone, and via e-mail. Once each support member was interviewed, the articles were completed and e-mailed to the interviewees to add or change any information and approve the information included from their interviews. The interview with Cary Griffin occurred over the phone, with follow up via e-mail.

There are many success stories of people who have created and are running their own microenterprises. This edition only spotlighted five. The rest of this edition focuses on what can be learned by microenterprise successes, and what needs to occur within the communities of education and special education, small business support systems, and the disability support communities in response. These learning points have been gathered from the interviewee’s statements, and interviews conducted with some of those who have provided support with their microenterprises, as well as Cary Griffin, an expert in the field of self-employment and people with disabilities. Finally, the edition will touch on a couple of other small business and customized employment ideas that may also benefit those interested in a personalized employment process. Although this edition focuses on microenterprise success stories, there are many other stories of those with disabilities who have started their own microenterprises, but have not been able to find success. This lack of success may occur for many reasons, but some of the reasons include not finding support through the government support systems for people with disabilities, non-profit support systems, or through public school transition services (Sowers, McLean, & Owens, 2002). Another reason includes the person who wants to run a microenterprise not being able to find a niche for their business, not being able to have or obtain the skills they need to run a microenterprise,

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or finding that other employment options may be a better fit for the person with a disability and their family (Griffin & Hammis, 2011). Unfortunately, especially for those with multiple severe disabilities, sheltered and segregated employment is still emphasized in many communities, and a variety of employment options are not considered, recognized nor offered (Griffin & Hammis, 2011; Rizzo, 2002). While interviewing the four microenterprise owners for this edition, and their supporters, different perspectives from support team members were obtained. These support members included: • Bob Puryear (Job Coach, Advocacy Resource Center [ARC] of Macon GA) who is Nandi Isaac’s job coach. • Shelly May (Grants Manager for the Kansas Council on Developmental Disabilities)—the Kansas Developmental Disabilities Council gave Jenny Unrein of Jenny Lu Designs some start up funds for her microenterprise. • Members of the Customized Employment (CE) support team from the Kansas Deaf Blind Project who assisted in the customized employment process with Jackie Kopaska. They included the following explanations for each of their positions and the Kansas Deaf Blind Project: o Jon Harding: Network Liaison, National Consortium on Deaf-Blindness o Beth Jordan: Great Plains Regional Representative, Helen Keller National Center o Cary Griffin, a Senior Partner at Griffin-Hammis Associates, LLC, (http://www.griffinhammis.com) and an expert in self-employment for people with disabilities, also was interviewed and provided ideas about microenterprises. o Megan Cote: Coordinator, Kansas Deaf-Blind Project Information about organizations serving individuals with deaf-blindness is provided as an appendix.

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Interviews Learning Points continued from page 21

Throughout all of these interviews, seven important points about microenterprises and customized employment have been identified. These seven points will be discussed further throughout this article.

1. Microenterprise, specifically through customized employment processes, is a viable employment option for some people with disabilities. Jackie, Jenny, Nandi, Jenna, Donna, and David are all examples of how microenterprise, especially when created utilizing customized employment processes, is a viable option for some people with disabilities Shelly May discussed how Kansas, with GriffinHammis Associates, LLC, is trying to increase the opportunities and options in the State for entrepreneurship. Cary Griffin especially emphasized that, for some adults with disabilities, some type of microenterprise, customized employment, and job creation, may open up employment options that could not be provided easily any other way. He discussed how having a legitimate real small business can actually be an advantage when working within the Social Security and Medicaid systems. Those involved early on with Jackie’s microenterprise (Jackie K Bags) and the customized employment processes especially emphasized that Jackie and her family deserve all of the credit for the creation, continuance, and success of her microenterprise. 2. Owning and running a microenterprise is NOT for every person and family nor for every support team. Bob Puryear explained a microenterprise option has been very good for Nandi, but that he continues to work as a regular job coach for other adults with disabilities in more typical employment situations. He and other supporters mentioned that it takes specific skills, or the motivation to learn specific skills, such as self-advocacy, extreme persistence, obtaining financial support in some way, stubbornness, ambition, and that these skills are often necessary both for the owner of the microenterprise and the family. Jon Harding (member of Jackie’s CE support team) especially emphasized that creating a successful business means having a skill or finding a niche or need for a business where success can be obtained. Every person and/or family does not have such a skill, nor are able to find a niche or need, so running a microenterprise would not be for people without these abilities or desires. 3. Running a microenterprise takes a committed, knowledgeable, and dedicated support team, and large amounts of self-advocacy.

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Each microenterprise owner who was interviewed had a committed, knowledgeable, and dedicated support team, and they and some of their family members have had to become very strong self-advocates. All of the microenterprise owners and some of their families have had to work very hard to create their support teams. David had to appeal a decision. Jenny and Jackie both have tried numerous times to obtain funding from voc rehab with limited success. Nandi has been able to obtain some great support, but also needs further support as her business is growing. Some of the microenterprise owners and their family members closely involved with their microenterprises mentioned finding support with brainstorming, people to act as sounding boards, and moral support with certain people including the former members of Jackie’s support team, and David and Nandi mentioned people who have been very helpful in this type of support role. Cary Griffin emphasized that typically, when microenterprises do not succeed it is because the person with a disability is not able to obtain the supports most needed.

4. Providers in the disability service arena need to be better trained about microenterprise. This arena includes includes VR, DD Services, Supported Employment, and other state and private/non-profit services. Efforts to educate people in this complex system need to be broad and comprehensive. Providers also need to be taught to be flexible and open-minded about people with disabilities owning and running their own microenterprises. They need to be flexible enough to offer a full range of employment options. Every interviewee mentioned the lack of full support and options for people with disabilities to run microenterprises within the disability service community. Shelly May discussed that the Kansas Developmental Disability Council’s current focus is to expand the support for disability service providers, by providing training opportunities throughout the state with their new focus on entrepreneurship. She stated that they want to have a “long lasting impact” with their current project with which they have partnered with Griffin-Hammis Associates, LLC. This project is also emphasizing work with the Small Business Development Center in Kansas. David and Cary Griffin emphasize many within the small business development community and the disability service community lack information and training about an assisting person with a disability to create, run, and continue their microenterprise efforts. Although the small business development community has stores of relevant knowledge about launching and maintaining enterprises, they often have no knowledge about people with disabilities.

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5. Special and other educators—especially those involved in transition—need to be better trained about microenterprises and customized employment as employment options for all people with disabilities, and especially those with multiple and more severe disabilities, from young ages. The lack of support in public/special education was a theme of frustration for all the microenterprise owners interviewed. Jackie, Jenny, their parents, and other interviewees mentioned the increased needs for middle and high school teachers, especially those focused on transition in special education, to become more knowledgeable and supportive of a variety of ideas and employment options, such as microenterprise and customized employment, especially for those with more significant disabilities. More than one interviewee described a huge hole in the training of middle and high school teachers involved in transition with students with severe and multiple disabilities. 6. Microenterprises and customized employment need to continue to be an option for people with disabilities to obtain inclusive, integrated, and possible competitive employment. Jackie’s Customized Employment (CE) support team and Cary Griffin all emphasized that microenterprises and customized employment need to continue to be an option that is inclusive, integrated, and competitive, although it is important to note that competitive employment may not be the ultimate goal for all people with disabilities who go through a customized employment process. The ultimate goal of customized employment is job creation while also meeting employer’s need—but the processes of customized employment can also be utilized to create other employment or life options, such as a microenterprise, which is what occurred with Jackie. There unfortunately have been bad examples of microenterprises. In these unsuccessful efforts the business has not been truly a microenterprise, but rather an attempt to obtain charity for the person with a disability. Cary Griffin mentioned that typically these types of businesses do not have staying power. Thus, the interviewees emphasized that microenterprises and customized employment should be used to create real businesses that can fulfill real business or supply needs. Cary discussed that “dumbing down” business is not the goal; microenterprises are real enterprises, and need to continue to be created as such. Jackie’s CE support team members emphasized that, although it may be necessary and even helpful for people with disabilities and their families who are running microenterprises to network in

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Online Resources http://microenterprisenetwork.blogspot.com A new website created to be a network for microenterprise owners, and a database for research, training, and other information about microenterprises and other individualized employment formats.

http://www.griffinhammis.com

Griffin-Hammis Associates, LLC is a full service consultancy specializing in developing communities of economic cooperation and self-employment opportunities for people with disabilities.

http://www.start-up-usa.biz US Department of Labor’s Office of Disability Employment’s website for self-employment technical assistance, resources and training

order to assist each other, especially since the disability support system often does not consistently provide adequate support, the emphasis of inclusive and integrated employment as the goal for a microenterprise and customized employment needs to be maintained.

7. Although there is a lot of information about microenterprises on-line, there is not one central place for people to access this information, and it can be difficult to network with others who also are running their own microenterprise. Finally, Nandi and her mother, David, and Cary Griffin all discussed that there is information on-line about microenterprises, but that there is not one central place that is easy to access. Nandi and her mother emphasized that it is difficult to network with other microenterprise owners and their families. As a result of this need, the following website has been created to begin a network for microenterprise owners, and to be a database and depository for research, training, and other information about microenterprises and other individualized employment formats: http://microenterprisenetwork.blogspot.com/. Other helpful sites may include Griffin-Hammis Associates, LLC website: http://www.griffinhammis.com and a website created by the US Department of Labor Office of Disability Employment Policy: http://www.start-up-usa.biz.

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Interviews Learning Points continued from page 24

References Griffin, C. & Hammis, D. (2011) Discovering personal genius: Self-employment for transition-age youth. National Gateway to Self-Determination, 2, 1417. Helen Keller National Center (HKNC). (2012) Retrieved from http://www.hknc.org Marc Gold & Associates (MG&A). (2012) Retrieved from http://www.marcgold.com/ Rizzo, D. C. (2002) With a little help from my friends: Supported self-employment for people with severe disabilities. Journal of Vocational Rehabilitation, 17, 97-105. Sowers, J., McLean, D., & Owens, C. (2002) Self-directed employment for people with developmental disabilities: Issues, characteristics, and illustrations. Journal of Disability Policy Studies, 13(2), 96-103.

Your Passion, Our Purpose.

University of Nebraska–Lincoln Pursue a career in Special Education. Disciplines:

Programs:

• Autism/Severe Disabilities • Visual Impairments • Intellectual, Sensory & Developmental Disabilities • Deaf Education • And more!

• Master’s degrees • Education specialist degrees • Graduate certificates • Teaching endorsements

Get the details at

online.unl.edu/UNLsped Special education & communication diSorderS The University of Nebraska–Lincoln is an equal opportunity educator and employer. ©2012, The Board of Regents of the University of Nebraska. All rights reserved. GDP_CHS233.13

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Interviews

Variety of Employment Options Interviewer: Mary Pearson, Ph.D. Interviewee: Cary Griffin, Griffin-Hammis Associates, LLC

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lthough microenterprises, as an outcome of customized employment, are an important option, other personalized options for employment of those with disabilities are also crucial. Many options are closely related to microenterprises and can be results of a customized employment process. Some examples include parent partnership employment, where parents may run their own business, and partner with their adult son or daughter to fulfill an employment need within the business. This would occur while matching this employment need with the son or daughter’s skills and interests, and maintaining an inclusive, integrated, and possible competitive employment environment. Other examples include job creation, and purchase

of one’s own adapted or modified employment equipment to facilitate customized employment or job creation. Cary Griffin of Griffin-Hammis Associates, LLC discussed how microenterprise efforts may be combined with other employment options (as listed above) to produce customized employment. During the interview he related a story of a young man, who with some funding assistance, was able to purchase some eye glass making equipment to make eye glasses in an hour. This young man was able to set up a business within his father’s optometry office to offer eye glasses made in an hour. This family was able to successfully utilize a variety of employment options including customized employment, microenterprise, parent partnership employment, job creation, and purchase of one’s own equipment! Another example of a family that has been utilizing a variety of employment options is JEllen’s House of Fabric, LLC. Their story is included in this edition to exemplify what utilizing a variety of employment options may involve.

JEllen’s House of Fabric, LLC Interviewer: Mary Pearson, Ph.D. Interviewee: Joyce Ely

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or the interview about Sarah’s JEllen’s House of Fabric, Joyce, Sarah’s mother, and the author exchanged e-mails in order to complete the interview. The author wrote a list of questions, and Joyce then answered them related to the business and Sarah. The author then wrote up the article about the business and Sarah, and sent it to Joyce for approval. JEllen’s House of Fabric, LLC is an example of parent partnership employment. Joyce Ely, the owner of JEllen’s was interviewed for this edition. She discussed how she, her husband and daughter,

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Sarah, who has Down syndrome, worked together to open their small business. Sarah, like her mother, has an interest in sewing, fabric, and creating through sewing. JEllen’s is a contemporary quilt Joyce and Sarah boutique in Ohio. The mission has been to create an inclusive employment environment of people with and without disabilities, including young adults with disabilities. They are also working on opening Sarah’s Sewcial Lounge in a large room upstairs from the Boutique, “equipped with sewing

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Interviews JEllen’s House of Fabric, LLC continued from page 25

machines and supplies where people can come to sew, create, and share with one another.” Joyce’s husband already was renting part of the building where JEllen’s currently is housed, when the family decided to open the Boutique. They approached the County Board of Developmental Disabilities in hopes of obtaining some funding for their idea of parent partnership employment, as well as employing some other young adults with disabilities, but found there were no funding options. So they moved forward with their ideas on their own. Joyce also discussed the option of having Sarah become a full business partner with a lawyer, but received advice that doing so would impact Sarah’s Social Security Insurance and Medicaid too much. So, instead Sarah is considered an employee of the Boutique, and Joyce is sole owner. But, Sarah and her parents have created financial planning for her future, and the future of the business and Sewcial Lounge that involve and include Sarah. Joyce concurred with what the other interviewee’s discussed, that there can be a lack of support in the disability service world for an expanded variety of options of employment of people with disabilities. They continue to work with their local developmental disabilities community services to find employees whose employment skills and interests fit into their self-owned business, which is not always easy. Joyce and Sarah believe that more support is needed within the disability support community for a variety of options for employment of those with a variety of disabilities. They also felt very unprepared when Sarah was leaving public schooling, and wished that her school officials had provided better options and had more knowledge about a variety of employment ideas after public education ended. But, Sarah and her parents have learned to focus on the positive, and move forward, not letting roadblocks deter their plans and progress.

Online Resources http://jellenshouseoffabric.blogspot.com/ http://www.jellenshouseoffabric.com/ http://sarahely8989.blogspot.com/

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Left: Sarah showing a local news reporter how to use a sewing machine. Right: Sarah showing off a quilt display at the Boutique.

Joyce and Sarah’s advice for others is summarized best by Joyce: “The rewards however, far outweigh the demands [of owning a small business]. Watching the customers interact with those we employ is extremely enjoyable.” They also discussed finding something you are passionate about, which will help balance the hard days, and the lack of money, especially during the first months of start up. Joyce discussed throughout the interview that determination is vitally important when trying to find a way to utilize a variety of employment ideas, rather than accepting the assumed lack of options.

See a news report about Sarah’s work at the boutique and her nonprofit work

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Interviews

The Ultimate Point: OPTIONS Interviewer: Mary Pearson, Ph.D.

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his edition of TASH Connections has been dedicated to showing some of the variety of options for employment obtained through customized employment processes and microenterprise. First, customized employment, creative means of employment, and microenterprise were defined and more fully explained. Next, interviews of six microenterprise owners displayed successful stories with a variety of microenterprises. Jenny of Jenny Lu Designs, and Donna and Jenna of Just for You CardArt displayed how an interest can become a microenterprise, which people can run while also involved in other activities and working opportunities in their lives. Jackie from Jackie K Bags found success utilizing her skills using assistive technology and interest in design, as well as family support. Finally, Nandi from Scan with Nan and David from Race Care Waterboy showed how support from supported employment and Vocational Rehabilitation can help create a microenterprise. Nandi’s story exemplifies that person centered customized employment processes can be utilized to determine the support needs for a microenterprise owner, and David displayed how self-advocacy is an important component to running a successful microenterprise. The interviews with support team members and discussion with Cary Griffen help expand the discussion about customized employment and microenterprise as options for employment for some people with disabilities. Team members who helped Jackie begin her microenterprise emphasized that such an employment option needs to be personalized to the individual and her support system, and that customized employment processes can greatly assist in discovering the personalization needed. Nandi’s job coach, Bob Puryear discussed how assisting Nandi requires flexibility in job coaching, but can be a successful process. Cary reinforced these findings from the interviews by discussing how important legitimate microenterprises need to be true businesses.

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He emphasized that microenterprises should be considered a valid option for employment for those with a range of abilities. Further, lasting microenterprises should be based upon real interest in owning and running one’s own business and should find a niche in the business environment providing a service or a product that truly draws people to the microenterprise. Finally, Joyce and Sarah from JEllen’s House of Fabric display another option beyond microenterprises, where a parent partnership within a family owned business can also provide employment options for some with disabilities. As the interviewees for this edition of TASH Connections display, people with a range of disabilities can own and run their own microenterprises. They all have specific needs, including funding, a support team, and often family support, but most specifically, people with disabilities need the option of becoming a microenterprise owner. They need the option of being included in a customized employment process at an early age educators who understand these processes and employment alternatives and a disability support community that provides a full range of options, rather than limited employment opportunities. Some people interested in microenterprises may be, like David, who searched out and obtained his own training and self-advocated at every step of obtaining his microenterprise. Others may be like Jackie, who obtained skills in school that then blossomed to become a microenterprise. Some may be like Jenny and Nandi who saw a need in their community, and found an interest matched with this need. Another microenterprise owner may partner with a friend, like Donna and Jenna, utilizing an interest or hobby originally done for fun, which can become a microenterprise that fits into an already busy life. Other families may be in situations like Joyce and Sarah’s, who instead of owning a microenterprise, have had to explore a larger range of small business and customized employment options. The ultimate point, though, is that people need a full range of employment options, and supporters educated to look beyond the status quo, and embrace the potential a variety of employment options can provide.

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Interviews The Ultimate Point: OPTIONS continued from page 28

Appendix The Kansas Deaf-Blind Project The Kansas Deaf-Blind Project is also funded by OSEP, and serves children and youth (ages 0-21) with deafblindness in the state of Kansas. The project conducts an annual census of children with deaf-blindness in the state, disseminates information to families and service providers, conducts trainings, sponsors parent trainings and support groups, maintains a library of materials, conducts pre-service and in-service activities, and works with other state agencies to improve services and outcomes for this population.

Website: http://kansasdeafblind.ku.edu

Helen Keller National Center (HKNC) The Regional Representatives of HKNC are located in ten offices across the country. They are responsible for assessing the needs of individuals, communities, and states within their regions; developing strategies of collaboration, coordination, and cooperation to help meet those needs; advocating for those who are deafblind in local, state, national and international forums (HKNC, 2012).

Website: http://www.hknc.org

The National Consortium on Deaf-Blindness The National Consortium on Deaf-Blindness (NCDB) was, at the time of working with Jackie Kopaska, involved in a “customized employment” (CE) initiative that worked to promote CE with youth who were deafblind in several states, including Kansas. NCDB contracted with Marc Gold and Associates (MG&A) to provide training on CE and build the capacity of state Deaf-Blind Projects to implement CE approaches. Jon, Megan, and Beth worked with Jackie as part of her “customized employment” support team. The guest editor of this edition (Mary Pearson, Ph.D.) was hired by NCDB to conduct “Discovery” with Jackie, who was 21 at the time of the CE initiative. Discovery is a term MG&A uses to describe a process whereby the question of “Who is this person” is revealed. Information revealed in “Discovery” provides the foundation information that is used to customize a position with an employer. Jackie’s CE team was unique because it brought together three different agencies, three different perspectives, and diverse organizational resources in an effort to support Jackie’s employment. It was also helpful to have an “outsider” (Mary) involved in conducting “Discovery” to reveal interests, insights, and possibilities that are not always apparent to those who know the person with the disability. At this point, the CE team no longer works directly with Jackie and her family, although they sometimes are contacted by Jackie and Sherry for brainstorming, or just to act as listening ears. The National Consortium on Deaf-Blindness (NCDB 2.0) is a national Technical Assistance project funded by the Office of Special Education Programs (OSEP). NCDB supports state Deaf-Blind projects across the country by improving services and outcomes for children and young adults with Deaf-Blindness, ages 0-21. In its current cooperative agreement with OSEP, NCDB 2.0 is focusing on strengthening the connectivity of the Deaf-Blind projects around four “initiatives”: Early Identification, Family Engagement, Interveners, and Technology Solutions.

Website: http://www.nationaldb.org

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Call for Nominations: Editor of RPSD The TASH Editorial Search Committee is beginning the search for the new Editor of RPSD. The Editor serves a three-year term that will begin officially in June 2014. The Editor is an Ex-Officio member of the TASH Board of Directors. Nominations or direct applications are invited from TASH members with the experience, expertise, and availability described below. Applications from traditionally under-represented groups including people with disabilities, women, and people representing racial or ethnic minority groups are particularly encouraged. The following criteria will be used in making the selection decision: 1. Prior editorial experience: Previous experience as an Editor or Associate Editor of a scholarly journal in the field is preferred, especially RPSD. Experience in reviewing for refereed journals is required. Experience with electronic review systems is desired. 2. Record of authorship: Substantial publication record in the area of severe disabilities. 3. Commitment to TASH’s mission and vision: Support of TASH values as described in resolutions and other association activities. 4. Record of leadership: Demonstrated record of leadership on the national level in the area of severe disabilities, need to appoint associate editor and monitor editorial board. 5. Commitment to excellence and scholarship: A commitment to uphold the scholarship, rigor and reputation of the journal, while also providing leadership to move in new directions and innovative practices; and serve as an advocate for the journal and the publication mission of TASH. 6. Research skills: Expertise in one or more research methods commonly used in the area of severe disability, for example: within-subject designs (single subject), qualitative methods, and/or quantitative methods including large-N descriptive or survey studies, experimental methods, and multivariate modeling. 7. General organizational skills: Evidence of ability to meet important deadlines and organize major tasks. 8. Resource availability: Ability to commit time and resources to (a) the production of RPSD for a three-year period, (b) attend the annual conference, and (c) participate in Board meetings. If you are interested in being considered for this position, please send a letter of interest and your vita to: RPSD Editor Search, TASH 1001 Connecticut Ave., NW Suite 235, Washington, DC 20036 by December 1, 2013. You may also email your nomination or notice of your interest to: info@tash.org. Further application materials will be requested from finalists. If you want to nominate someone for this position, please contact him or her and request this information.

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Association News New Faces in the TASH Office! Jenny Stonemeier has joined TASH

as the Education Policy Director, a position created as part of TASH’s involvement in a national grant awarded by the U.S. Department of Education Office of Special Education Programs. The grant is funding The SWIFT Center (Schoolwide Integrated Framework for Transformation). The Center will assist schools across the country in implementing school wide inclusive practices that will improve academic and behavioral achievement for all students. Jenny boasts more than 15 years experience in the disabilities field, and we’re thrilled to have her on board. Jenny can be reached at jstonemeier@tash.org. TASH is also excited to have Edwin Canizalez join our national staff as Events and Training Manager. Edwin has more than 10 years experience managing events and conferences, and designing and implementing high quality training programs in the U.S. and abroad. As TASH’s Events and Training Manager, Edwin’s responsibilities will include the annual TASH Conference and other events and training initiatives. Edwin is a fluent speaker of English, Spanish and Italian, and has extensive event and training experience incorporating cultural competency. Edwin can be reached at ecanizalez@tash.org.

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Dawn Brown has joined that TASH

staff as Development Director. Prior to joining TASH, she worked in development in healthcare. Dawn has more than 10 years experience in business development and fundraising, and is excited to bring her skills to her new role with TASH. As Development Director, Dawn will be responsible for securing conference sponsors, and raising money for TASH through individual gifts, corporate partnerships and grants. Dawn can be reached at dbrown@tash.org.

TASH Regional Conference a Success TASH members had a productive learning experience at Promoting Self-Determined Futures. This regional conference was an event co-hosted by TASH, New England TASH and the Paul V. Sherlock Center on Disabilities, and sponsored by the Rhode Island Department of Elementary and Secondary Education and the Rhode Island Department of Human Services- Office of Rehabilitation Services. Our presenters spoke to a sold-out audience about successful transition from school to adult life for youth with significant disabilities as well as the philosophy and values that guide

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Association News

Human Rights

successful practice. Participants also benefited from a panel of selfadvocates and parents wherein they discussed lessons learned from self-determined lives. We look forward to future collaborations with our local chapters to organize more regional conferences. You can read more about this event, and view the conference program by visiting tash.org/conferences-events/promoting-self-determined-futures.

TASH Partnerships Lead to Maximum Impact in Employment, College and Career Prep and Inclusive Education LEAD Center. TASH is a proud partner in the newly formed LEAD Center, a collaborative of disability workforce and economic empowerment organizations led by the National Disability Institute. The LEAD Center is dedicated to advancing sustainable individual and systems level change to improve competitive, integrated employment and economic self-sufficiency for adults withPBIS disabilities. OverPBIS time, we’ll be sharing additional information on successful employment strategies that benefit jobseekers, employers and services-providers in the workforce system. Learn more at http://www.leadcenter.org.



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CEEDAR Center. TASH has also partnered with CEEDAR Center, a national technical assistance center that supports states in their efforts to develop teachers and leaders to successfully prepare students with disabilities to achieve college and career ready standards. Through this partnership, TASH will advise on the development of a state assessment on personnel practices and a state technical assistance plan, and provide guidance on the creation of professional development materials. You can learn more about the CEEDAR Center at http://ceedar.education.ufl.edu.

SWIFT Center. This update is the first edition of what will be an ongoing series on the TASH blog to keep you updated on TASH’s role in the SWIFT Center (School Wide Integrated Framework for Transformation). The SWIFT Center is a national technical assistance center funded by the Office of Special Education Programs to implement a model for educating

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general and special education students together to improve schoolwide academic outcomes. In this update, hear from TASH Education Policy Director Jenny Stonemeier on our progress to date. (http://tash.org/tash-partners-with-swift-center/) Cross Topic

Please Continue to Take Part in National Advocacy Efforts APRAIS Calls to Cease Funding to Judge Rotenberg Center. In a recent

Advocacy letter to Michael Yudin, Acting Assistant Secretary at OSERS, and Cindy Mann, Deputy Administrator/Director of the Center for Medicaid and CHIP Services, APRAIS—and 20 member organizations—calls for the immediate cessation of federal Communication funding to the Judge Rotenberg Center in Massachusetts in light of renewed scrutiny by the US Food and Drug Administration into the Center’s use and modification of the “Graduated Electronic Decelerators” as a behavior management technique for the young people in the Center’s care. (http://tash.org/aprais-issues-letter-on-judge-rotenberg-center/) PBIS

TASH Signs ABLE Act Letter of Support. TASH

PBIS has signed a letter of support for the Achieving a Better Life Experience (ABLE) Act, which was introduced earlier this year and designed to improve quality of life for individuals with disabilities through tax-free savings accounts. The ABLE Transition Act establishes a new subsection within Section 529 of the Internal Revenue Code to allow individuals with disabilities to establish ABLE accounts to fund a variety of essential expenses, including medical and dental care, education, community-based supports, employment training, assistive technology, housing and transportation. (tash.org/tash-signs-able-act-letter-of-support/)

Opposition to CRPD Attempting to Derail Support. In light of the failure to ratify the Convention on the Rights of Persons with Disabilities, a UN Human Rights treaty, TASH and its allies have been work together to build this year’s effort to gain full ratification. Recently, though, the United States International Council on Disabilities made note of an effort to derail the progress that has been made, an opposition led by the Home School Legal Defense Association. Please advise your networks and colleagues of the HLDA’s attempts to confront, berate and sway our attempt of promoting the rights of people with disabilities here at home and abroad. You can view several documents on the TASH blog that counter the misinformation being spread by HLDA and others: http://tash.org/crpd-alert-opposition-trying-to-derail-support/

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Association News 2013 TASH Conference

TASH Training Opportunities

TASH Members Now Have Access to On-Demand Training Content

Mark Your Calendar for December 11-14 in Chicago For more than 35 years, TASH members and supporters have promoted the full inclusion of people with significant disabilities and support needs in all aspects of our communities. This endeavor is especially successful when different stakeholders come together to address critical areas of need in our support systems and service areas. This year’s conference theme, “A Movement United,” speaks to that end, and calls upon a network of advocates, professionals and policy makers to build bridges to advance inclusive lives for people with significant disabilities. The conference theme is a call to action, considering: people with disabilities are often lumped into segregated, parallel systems and services, distancing them from inclusive environments; systems and services are effective often do no communicate with one another, creating gaps; and, different stakeholders address issues differently and do not necessarily align to advance progress. This year’s TASH Conference presents an opportunity for stakeholders to connect with others passionate about inclusion, and serves as a catalyst for change in communities around the world. Come away not only with renewed passion for equity, opportunity and inclusion, but also the tools and resources needed to create pathways for meaningful, lasting change. Learn more at http://tash.org/2013tash.

TASH members now have access to a complimentary suite of training sessions on the prevention of restraint, seclusion and aversive interventions. The sessions are a reprise of content previously only available for purchase, and part of an new effort to make education and advocacy content available as part of TASH membership. Visit www.tash.org/training to learn more.

2013 Premium Training Content Unveiled A portion of the 2013 TASH Training schedule has been announced, featuring opportunities to take part in educational training sessions over the web via Adobe Connect (content can also be accessed by teleconference). These training sessions offer a rich media experience with interactivity in mind. Participants can engage in group chat, ask questions of the presenters, and view multiple screens – such as the presenter, their presentation, and supporting documents. The following trainings have been scheduled for 2013. If you cannot make a live training, recordings will be made available.

Expecting Academic Achievement in General Education Curriculum

April 25 @ 2 p.m. ET Presented by Stacey Skoning and Denise Clark, University of Wisconsin-Oshkosh

An Overview of Person Centered Planning: The State of the Art

May 30 @ 2 p.m. ET Presented by Aaron Johannes, Shelley Nessman and Barb Goode, Spectrum Society for Community Living

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Association News Additional trainings will be added throughout the year. For questions, please contact Patrick Riley at priley@tash.org, or learn more by visiting http://tash.org/training. And stay tuned for upcoming training opportunities, including:

Thriving in Transitions: Self-Directed Living, It’s Never Too Late

Presented by Matthew Medina, self-advocate, Eileen Medina, parent and former transition coordinator, Richard Rosenberg, University of Wisconsin-Madison, and Scott Shepard, California State University Northridge

Building and Sustaining Our Communities through Time Bank Exchange Presented by Joe Donofrio, co-founder of CHOICESS Community Living

TASH Delivers Integrated Employment Recommendations The TASH Employment Committee recently proposed a set of recommendations for nonEmployment legislative changes that have the potential to substantially increase integrated employment outcomes for people with intellectual and developmental disabilities. The recommendations would affect the administration of Medicaid Waivers, Vocational Rehabilitation, the Department of Labor and Section 14(c), and were delivered Inclusive Education to Sen. Harkin, the Office of Special Education and Rehabilitative Services and the Centers for Medicaid and Medicare Services. TASH members are encouraged to share these recommendations with state Vocational Rehabilitation, Medicaid Waiver and Department of Labor leaders to support the full implementation of these changes. Diversity Read more at http://tash.org/tash-delivers-integratedemployment-recommendations/. Human Rights

TASH Membership Committee Seeks New Voices The TASH Membership Committee is currently seeking new members. The Membership Committee is responsible for developing a recruitment plan, recommending member dues and other policies and practices regarding communications with Community Living TASH members. Any TASH supporters interested in becoming an active member of this key operating committee would need to participate in monthly conference calls in order to discuss assignments regarding new member recruitment and member retention. If interested, contact Patrick Riley at priley@tash.org. Employment

TASH Releases FAQ Resource on Inclusive Education This publication was created by TASH’s Inclusive Education Committee, comprised ofInclusive parents, Education self-advocates, faculty-researchers, TASH Board members, and others engaged in work to promote inclusive education. These questions are those most frequently asked by parents, professionals, and community members and the answers are meant to be brief, to the point, not all encompassing. Feel free to Diversity give us feedback, share this link, or suggest other questions that we might answer in the next edition of FAQs. View and share these resources at http://tash.org/tash-releases-faq-resource-oninclusive-education/. Human Rights

Call for Nominations: Editor of RPSD The TASH Editorial Search Committee is beginning the search for the new Editor of RPSD. The Editor serves a three-year term that will begin officially in June 2014. The Editor is an ExOfficio member ofCross the TASH Topic Board of Directors. Nominations or direct applications are invited from TASH members with the experience, expertise, and availability. Applications from traditionally under-represented groups including people with disabilities, women, and people representing racial or ethnic minority groups are particularly encouraged. Advocacy Read more at http://tash.org/call-for-nominations-editor-of-rpsd/.

Cross Topic

Communication

Advocacy



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PBIS

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Chapter News

TASH Chapters are Growing In 2012 and 2013 TASH welcomed four new chapters: Iowa (June 2012), Nevada (July 2012), Missouri (December 2012) and New York (March 2013). TASH Chapters provide a unique and powerful connection to the local community. TASH Chapters unite advocates, push for legislation and promote systems changes at local and state levels by applying TASH values to opportunities in communities, schools, jobs and programs. To learn more about each chapter and how to contact the chapter leaders, visit www.tash.org.

Penn TASH Celebrates the ADA Anniversary in Philadelphia The Penn TASH chapter attended the inaugural Disability Pride Day at the National Constitution Center, in Philadelphia, Pa., to celebrate the 22nd anniversary of the Americans with Disabilities Act in July 2012. Penn TASH board members Jean Searle and Jim Conroy were among a select group of speakers at the event and hosted an exhibit booth at the event. To learn more about the Penn TASH chapter, contact PennTASH@gmail.com.

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Chapter Leadership Meets at TASH Conference in Long Beach Every year, the Chapter Leadership Committee hosts a workshop for Chapter leaders at the Annual TASH Conference. In November 2012, TASH Chapter leaders met in Long Beach, Ca. uniting old and new friends. Newly formed chapters paired with longer established chapters and worked through a person centered thinking tool to help each other identify strengths, challenges and areas for potential changes within each chapter. Chapter leaders also learned about the new TASH strategic plan and brainstormed strategies to increase membership within TASH. The Chapter Leadership Workshop is a much anticipated event for anyone who leads a chapter or is interested in starting a chapter. For more information about TASH Chapters, contact TASH, info@tash.org.

Arizona TASH Hosts 9th Annual Institute on Inclusive Practices Parents, teachers and students attended the Arizona TASH 9th Annual Institute on Inclusive Practices in January 2013. This two day event featured literacy strategies for students with autism, universal design for learning, general education modification, positive behavioral supports, and best practices in supporting selfadvocates.

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Read reviews and view photos from the event here: http://tash.org/recapping-the-arizona-tash-two-day-conference/. For more information about AZ TASH and trainings contact Sherry Mulholland mulhollandmatsutakeout@yahoo.com or Andrea O’Brien andrea.m.obrien@cox.net.

For more information about Missouri TASH, contact April Regester, aregester@umsl.edu.

Missouri TASH Screens Including Samuel

Approximately 250 people attended the “Planting the Seeds of Inclusion: Supporting the Growth of All Children” conference at the University of Wisconsin Oshkosh on March 2, 2013. Cheryl Jorgensen was the keynote speaker. The event was organized by Stacey Skoning. A TASH membership drive was also held in conjunction with the event. We grow our membership as we work to build our Wisconsin chapter. Thanks to all who came and made it such a positive day!

On February 8, Missouri TASH held a screening and discussion of the film, Including Samuel. Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now, he thinks about inclusion every day. Habib’s award-winning documentary chronicles the Habib family’s efforts to include Samuel in every facet of their lives, in a journey that transforms them all. This event was co-sponsored by the Ethical Society of St. Louis, and SSC Parent Education.

The University of Wisconsin Oshkosh Hosts Inclusion Fair

For more information about the start up of the Wisconsin chapter, contact Stacey Skoning, skonings@uwosh.edu.

TRUE CITIZENSHIP

People with learning difficulties are present in the community but how many are equal citizens of the world? How do we enable proper citizenship? By adopting our seven values for citizenship: support and care for all, respect each one, integrityliving by our values, for future generations, freedom of heart and mind, hope and courage, productive living and working. You can change them if you want. -Use our stories and questions for each value so that the person with learning difficulties can explore their own citizenship -Professionals, parents, commissioners and providers can explore their contribution to citizenship through a range of questions. -Services and organizations, using our methodology, can develop their own process for evaluating how they facilitate the development of citizenship for people with learning difficulties. (We use the term learning difficulties instead of disabilities as this is what people with differences we work with prefer.) “I can see beyond your walls. I can glimpse individuality and community. I am ready to join. When will you let me? Never mind, I’m breaking through.” Civitas Vera Available from: www.amazon.com

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TASH Gratefully Acknowledges the Following Donations of Time and Money Ben Adams Pat Amos Jacki Anderson Margaret Anthony Diane Baumgart Marianne Bethiuame Cheryl Brown Lou Brown Dawn Brown John Butterworth Michael Callahan Courtney Coffin Kenna Colley Adelaide Comegys Maureen Cronin Marion Curry Alyssa Dalton Phil Drumheiser Gail Fanjoy Amy Feinberg Beth Finger Robyn Fitzgerald Nick Fonesca Lise Fox Pat Fratangelo

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Philip Freguson Cecilia Gandolfo Michelle Gentry Donna Gilles Frekerick Hadeed Sue Hansen Rima Hatoum Elizabeth Healey Alan Holdsworth Pamela Hunt Lewis Jackson Young-Gyoung Kim Helen and Jennifer King Jeffrey and Susan Kunkel Kenneth Lakin Frank Laski Leslie Lederer Hope Leet Dittmeier Beth Lofquist Sharon Lohrmann Serena Lowe Patricia McCaffrey Sandra McClennen Jazarae McCormick Toni Mertzweiller

Lisa Mills Ari Ne’eman Hyun-Sook Park Holly Pepper Carol Quirk Whitney Rapp Michael Remus Curtis Richards Andy and Sherry Riethmaier Jeanne Rodriguez Shirley Rodriguez Lyle and Mary Romer Rita Rubin Wayne Sailor Caren Sax Susan Schaefer Leslie Seid Margolis Chad Sinanian David and Virginia Spies Michael Taylor Ellen Tierney Colleen Tomko Barb Trader Jean Trainor David and Virginia Ward

Kathleen Whitbread Kathleen Wigfield Betty Williams Charles Wortman Mark Wurzbacher Joe Wykowski Karen Zimbrich Nancy Zollers Greater Los Angeles Area Combined Federal Campagin Institute on Disability Kellogg Foundation Long Beach Convention and Visitors Bureau Mosakowski Family Foundation New Hampshire Charitable Foundation Penn TASH Public Consulting Group SAM Schools The Schreck Family Foundation United Way California Capital Region

TASH Connections w Spring 2012 w www.tash.org


SPECIAL FEATURE

TASH Conference: Recap and Look Ahead More than 1,100 in Attendance at the 2012 TASH Conference

T

hank you to everyone who made it to Long Beach, California, for the 2012 TASH Conference! It was truly a memorable experience, filled with reunions, a fantastic lineup of speakers, innovative presentation topics, tons of history and the kind of passion and enthusiasm one needs heading into the new year. And thanks especially to the active and passionate members of Cal-TASH, the conference local host committee and our team of volunteers, without whom this conference wouldn’t have been possible. The conference featured the Leadership Panel on Inclusion, a roundtable of inclusion leaders: Madeleine Will, Norman Kunc, Charlie Lakin, Barbara Ransom and Wayne Sailor. This roundtable of experts tackled pressing inclusion questions, such as: What have we accomplished in advancing inclusion? Why haven’t we done more? And what can we do to ensure progress?

TASH Connections w Spring 2012 w www.tash.org

The conference also included a remarkable keynote address by Eva Sweeney, a 29-year-old writer and documentarian (Respect: The Joy of Aides). Eva delivered a personal and inspiring talk on the topics of sex and sexuality. And who could forget the Evening with the Stars reception? Old friends and new friends alike celebrated and walked the red carpet during a star-studded event that featured Blair Williamson and Jamie Brewer, two actors who also represent Down Syndrome in Arts & Media. Also, Wretches & Jabberers stars Larry Bissonnette

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Special Feature: TASH Conference: Recap and Look Ahead

and Tracy Thresher were on hand. And Amy Brenneman, star of such shows as Judging Amy and Private Practice, joined us for photos and to discuss her passion for advocacy and inclusive education. The conference also included exceptional poster and concurrent sessions, acclaimed film screenings, an exhibit hall full of innovative businesses and micro-enterprises, and much more. Since those days in Long Beach TASH has received a lot of feedback from attendees and presenters on these conference features and others, and we’re happy that so many conferencegoers are enjoying the full-range of activities. We also collected feedback on what topics were most popular during the conference. The following pie chart shows the highest rated topical areas. We also received feedback that will directly impact the planning for the 2013 TASH Conference in Chicago. The Conference Committee is now developing task groups to find solutions to specific conference items. The committee, along with the TASH staff, is also working to attract a more diverse audience and increased involvement of self-advocate presenters.

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Top Left: Volunteers at the conference. Top Right: The Leadership Panel on Inclusion. Middle Left: Eva Sweeney giving the keynote address. Middle Right: Amy Brenneman.

TASH Connections w Spring 2012 w www.tash.org


Special Feature: TASH Conference: Recap and Look Ahead

Looking Ahead: A Movement United The historic Hilton Chicago will be the home of the 2013 TASH Conference, “A Movement United,” December 11-14. Following a tradition of great keynote speakers, we are proud to announce Father Gregory Boyle and Dr. Fabricio E. Balcazar have accepted our invitation to address attendees of the 2013 TASH Conference in Chicago. Father Boyle is the director and founder of Homeboy Industries, the largest gang intervention, rehabilitation and re-entry program in the United States. Father Gregory Boyle He has worked overseas in the Islas Marias Penal Colony in Mexico and Communities in Cochabamba, Bolivia. He is the author of the New York Times Bestselling book, “Tattoos on the Heart: The Power of Boundless Compassion.” And he has served on the State Commission for Juvenile Justice and Delinquency Prevention, The National Youth Gang Center Board and the Attorney General’s Defending Childhood Task Force.

Dr. Fabricio E. Balcazar

Dr. Balcazar is a professor in the Department of Disability and Human Development at the University of Illinois at Chicago. Balcazar has conducted research over the past 25 years on several disability-related areas, such as the development of systematic approaches for the effective involvement of people with disabilities in consumer advocacy organizations; the development

TASH Connections w Spring 2012 w www.tash.org

and evaluation of a model service delivery approach to increase consumers’ empowerment in the VR service delivery system; the development of interventions for helping Latino youth with disabilities who have dropped out of high school return to education and/or find jobs they can keep; the development of interventions to help minority students with disabilities transition into employment (including the development of entrepreneurial skills and start-ups for small businesses) and career development; and the promotion of cultural competence in rehabilitation services, among others. We’ll be announcing other speakers, special events and the entire conference schedule as the year progresses, but you can always find the latest information about this year’s conference on the TASH website. Visit http://tash.org/2013tash, and contact TASH at any time with questions or comments at conference@tash.org or call (202) 540-9020.

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Membership Application Effective June 15, 2012 q New Membership q Membership Renewal

Referred by ____________________________________________

Member Type: q Individual q Organization (org. member name): __________________________________________________ First Name: ____________________________ Last Name: ____________________________ Address: ____________________________________________________________________ City/State/ZIP: _______________________________________________________________ Country: ______________ Phone 1: ________________________________ q Primary

E-mail 1: ________________________________ q Primary

Phone 2: ________________________________ q Primary

E-mail 2: ________________________________ q Primary

(Organization Members Only) Are you the primary contact? q Yes q No Primary Contact Name: ________________________________________________________ Phone: ________________________________ E-mail: ________________________________

Membership Level TASH offers membership at a variety of levels. Please review the details below and choose the membership level that is appropriate for you. Individual and organizational memberships are available. Membership is valid for a 12 month term. A complete summary of member benefits can be found at www.tash.org/membership. Basic $30

Standard $75

Premium $150

Research and Practice for Persons with Severe Disabilities, the official TASH research journal (print copy)

Student * $45

X

Research and Practice for Persons with Severe Disabilities, (online access to current and archived issues)

Small Org $250

Large Org $350

1 COPY

1 COPY

X

X

X

X

X

Connections, the quarterly magazine written by and for TASH members (includes current and archived issues)

X

X

X

X

X

X

TASH in Action bi-weekly e-newsletter

X

X

X

X

X

X

Training discounts for webinars, publications and other offerings

X

X

X

X

3 STAFF

5 STAFF

Reduced registration rates for TASH Conference and events

X

X

X

X

3 STAFF

5 STAFF

Affiliation with a TASH Chapter

X

X

X

X

X

X

Advocacy Alerts & Updates

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*Student members are required to identify university: _____________________________________________________________ _

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-Continued on Next Page-

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Demographic Information (optional) Which of the following best describes you? (select all that apply) q Person with Disability

q Family Member

q Adult Service Provider/Related Services

q Student

q Professor/Researcher

q Special/General Educator

q Early Intervention

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q Other ___________________________________ What is your race or ethnicity? (select all that apply) q American Indian or Alaska Native q White/Caucasian

q Asian

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q Other ___________________________________

Are you affiliated with a university? If so, please specify: ___________________________________________________________ Please indicate your areas of interest (select all that apply) q Community Living

q Early Childhood

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q Education

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q Positive Behavioral Interventions and Supports

q Public Policy

q International Issues

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Payment Information Credit Card (select card type) q American Express q MasterCard

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Card #: __________________________________________ Expiration: ______________ Name on Card: __________________________________________ CVV: ______________ Authorized Signature: __________________________________________ Would you like to make a tax-deductible donation to TASH? q $10

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Total Payment (add membership total and donation, if applicable) $: ______________ Please submit this membership form via mail, fax or e-mail. With questions, contact (202) 540-9020. TASH 1001 Connecticut Ave, NW, Suite 235 Fax (202) 540-9019 Washington, DC 20036 E-mail info@tash.org

www.tash.org to learn more about TASH www.tash.org/member to log in to the membership portal www.tash.org/membership for an overview of member benefits

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Connections

Equity, Opportunity and Inclusion for People with Disabilities since 1975 TASH is an international leader in disability advocacy. Founded in 1975, TASH advocates for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. TASH works to advance inclusive communities through advocacy, research, professional development, policy, and information and resources for parents, families and self-advocates. The inclusive practices TASH validates through research have been shown to improve outcomes for all people.

Policy Statement It is TASH’s mission to eliminate physical and social obstacles that prevent equity, diversity and quality of life for children and adults with disabilities. Items in this newsletter do not necessarily reflect attitudes held by individual members of the Association as a whole. TASH reserves the right to exercise editorial judgment in selection of materials. All contributors and advertisers are asked to abide by the TASH policy on the use of people-first language that emphasizes the humanity of people with disabilities. Terms such as “the mentally retarded,” “autistic children,” and “disabled individuals” refer to characteristics of individuals, not to individuals themselves. Terms such as “people with mental retardation,” “children with autism,” and “individuals who have disabilities” should be used. The appearance of an advertisement for a product or service does not imply TASH endorsement. For a copy of TASH’s publishing and advertising policy, please visit www.tash.org.

w Individualized, quality supports in place of congregate and

segregated settings and services

w Legislation, litigation and public policy consistent with the

mission and vision of TASH

The focus of TASH is supporting those people with significant disabilities and support needs who are most at risk for being excluded from society; perceived by traditional service systems as most challenging; most likely to have their rights abridged; most likely to be at risk for living, working, playing and learning in segregated environments; least likely to have the tools and opportunities necessary to advocate on their behalf; and are most likely to need ongoing, individualized supports to participate in inclusive communities and enjoy a quality of life similar to that available to all people. TASH has a vision of a world in which people with disabilities are included and fully participating members of their communities, with no obstacles preventing equity, diversity and quality of life. TASH envisions communities in which no one is segregated and everyone belongs. This vision will be realized when: w All individuals have a home, recreation, learning and

employment opportunities

w All children and youth are fully included in their

neighborhood schools

w There are no institutions w Higher education is accessible for all w Policy makers and administrators understand the struggles of

TASH Mission & Vision As a leader in disability advocacy for more than 35 years, the mission of TASH is to promote the full inclusion and participation of children and adults with significant disabilities in every aspect of their community, and to eliminate the social injustices that diminish human rights. These things are accomplished through collaboration among self-advocates, families, professionals, policy-makers, advocates and many others who seek to promote equity, opportunity and inclusion. Together, this mission is realized through: w Advocacy for equity, opportunities, social justice and human

rights

w Education of the public, government officials, community

leaders and service providers

w Research that translates excellence to practice

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people with disabilities and plan – through laws, policies and regulations – for their active participation in all aspects of life

w All individuals have a way to communicate and their

communities are flexible in communicating in alternate ways that support full participation

w Injustices and inequities in private and public sectors are

eradicated

w Practices for teaching, supporting and providing services to

people with disabilities are based on current, evidence-based strategies that promote high quality and full participation in all aspects of life

w All individuals with disabilities enjoy individualized supports

and a quality of life similar to that available to all people

w All individuals with disabilities have the tools and

opportunities to advocate on their behalf

TASH Connections w Spring 2012 w www.tash.org


TASH Connections: Volume 38 Issue 2