What matters most

1. What matters most Media Landscape

2. The Media Landscape: Facts • More than 34,742 storiesmentioningdisability rights • More than 3,265 mentioning “sheltered workshops” • Positive stories have tripled since 2012 • Negative stories peaked between June 2013 (NBC) and February 2014 (EO signed) • Positive turn around began in the late summer of 2014 with the influx of editorials from families • Interview requests from: NBC; Associated Press; NPR; Al-Jazeera America; Huffington Post Live; New American Foundation; The Special Education Connection; Mother Jones; Bloomberg

3. The Media Landscape: 2012 Facts • 9,709 storiesmentioningdisability rights • 677 mentioning “sheltered workshops”

4. The Media Landscape: 2013 Facts • 12,010 storiesmentioningdisability rights • 1302 mentioning “sheltered workshops”

5. 2013 – NBC Sensationalizes Story

6. The Media Landscape: 2014 Facts • 13,062 storiesmentioningdisability rights • 1286 mentioning “sheltered workshops”

7. 2014 – Bloomberg Presents Balanced Story

8. 2014 – Bloomberg Presents Balanced Story

9. 2013 – 2014 – Article Endings NBC, June 2013 Bloomberg, September 2014

10. 2014 – Shift in Tone Springfield News-Sun Springfield, Ohio September 17, 2014 “I’m really not happy with changing where he is,” Sue Weldon said. “He’s 35-years-old. It would be a midlife change. He’s happy. He’s safe and that’s why I’d like him to stay.”

11. The Cap Times Madison, Wisconsin September 24, 2014 “Her program has been a lifesaver. It’s one of the choices that’s helped us be able to keep her in our family home.”

12. “He has always needed 24/7 care, and he always will.”

13. What we and other parents of individuals with autism want for our children when they grow up is no different than what parents of normally-developing children want. We want them to be physically well-cared for, with appropriate food, shelter, clothing and medical care. We want them to be able to maintain the skills for living and working that they were so painstakingly taught. And we want them to learn whatever new skills might help them with living, employment and enjoyment. But let’s not pretend: all of these needs are so much harder to provide for individuals with autism. And, many, if not most such individuals, will not be able to earn enough to provide for their needs themselves, at least in our present system. What is the present system? We oversimplify, but the life of an individual with autism is divided into two parts. The first is daytime activities; the second is residential. For those who can do some type of work, daytime activities can include work, most often in a sheltered workshop or with a job coach. Employment outside of a sheltered workshop is difficult to find and typically requires a parent locating an employer willing to hire an adult with autism. For those who cannot work, daytime activities are typically a day habilitation program run by a licensed agency that offers life skills classes, outings in the community and volunteer work. The burden of finding an appropriate day habilitation program rests largely on the parents, who rely on agency-sponsored fairs, word-of-mouth and their own investigation. Residential care for many adults with autism means living at home. For those hours when the adult with autism is not at work or at a day habilitation program, a caregiver is generally needed at the home. For parents who work full-time, this is a costly endeavor. Caregivers for disabled adults are difficult to find and require hourly rates of $15 to $25 per hour. In other cases, it is the parents who provide the at-home care. Even when an outside caregiver is used, parents must provide care during the time that they are not working. The toll on parents is tremendous, the stress exhausting.

14. The Arc and Hilltop are both among Livingston County’s top 10 employers. Closing the workshop would be akin to the county losing a major employer. For the employees at Hilltop, the work is more than a job. It provides a sense of community and a means of socializing in an environment where they feel safe and free from the pressures of a competitive workforce. The workshops contribute to the employees’ satisfaction with jobs, life and their self esteem. “I want to work. I don’t want to sit all day looking at four walls,” Heather Bump, an Arc client for 20 years and a self-advocate, told us earlier this summer. She works in food packaging at the workshop, an area with more stringent dress and conduct requirements than employees doing piece work. The advocates are not opposed to integrating workers, but they do not want those moves to come at the expense of sheltered workshops. Closing the workshops, advocates say, is an overly broad approach that limits the options available to developmentally disabled individuals. The advocates, such as the recently-formed family advocacy group at The Arc of Livingston-Wyoming, want all choices to be available. The Arc’s Family Advocacy Committee is mobilizing along with other like-minded groups across the state, to get their voices heard. The goal of the effort is to keep sheltered workshops open for those who need that level of service, create better employment support in the community such as pre-employment skills training, support staff and transportation that meets the needs of people working in the community; advocate for increased funding to provide the individualized, community-based services OPWDD is seeking; and advocate for integrated business models. September 12, 2014

17. “Everyone should have the opportunity to feel gratification and a sense of accomplishment, which this facility certainly makes possible,” said Regina Rogers, a client advocate and donor for the facility. “By giving these wonderful individuals tasks that they can perform well, it is truly heartwarming to see how they develop pride in their work and enhanced self-esteem.”

18. Gazettes Long Beach, California October 9, 2014

20. Jefferson City, Missouri December 15, 2014 “Our sole purpose is to provide meaningful employment for the disabled in the Jefferson City community,” she said. “We don’t have to worry about people not showing up. They put the rest of us to shame at times because they love their jobs.” … “For most of our workers this is the best place for them to work,” she said. “When I hire somebody I want them to know this could be a stepping stone and they could move on to competitive employment. Some have succeeded and others come back, and we always want our folks to know that the door is open and we don’t want them to fall through the cracks and not have a job.”

21. Dialogue Opinion: Community jobs preferred for disabled September 27, 2014 Jo Fessler is an Colerain Township resident. Ask anyone with a family member who has a developmental disability, and they will tell you their dream is to see their loved one find a meaningful job and, through that job, to contribute to society. That dream came true for my son, Tom, more than a dozen years ago. As an employee of a fast food restaurant in North College Hill, his life has been positively impacted by being part of a team. He has even earned the Employee of the Month award. Thanks to a new program in Ohio, Employment First, more families have been given a chance to see that same dream come true. Established by Gov. John Kasich in 2012, it's an effort to ensure that more individuals with developmental disabilities are successfully working in community-based settings. Until just a few years ago, that was an impossible dream for too many Ohio families. Every person has abilities, skills and talents that can enrich the community and the lives of people around them. For every Ohioan, working is a vital part of our life experience, and we should expect the opportunity for meaningful work to be within the reach of everyone, whether or not they have a developmental disability. Helping more Ohioans with a developmental disability find community-based employment benefits everyone. Those who have a disability gain greater independence, increased financial security and improved self-esteem. Employers and co-workers are exposed to more diversity and a broader range of capable employees. Our entire society benefits when all citizens are able to participate and contribute. Employment First will help more individuals achieve those goals through its focus on community employment as the preferred outcome for individuals with developmental disabilities. Employment First is shifting expectations, and that is welcome news. Even if you haven't heard about it, there's a good chance you've seen it in action locally. If you've eaten pickles from Izzy's restaurants, they were probably packed by Tony, who has been working at Kaiser Pickles for almost 20 years. If you've ordered a pizza from LaRosa's, you may have talked to Mark, who has worked in the company's call center for close to a decade. Mark has learned to enter orders with his feet because his arms were amputated when he was very young. While Ohio is making great progress in creating new job opportunities for those with developmental disabilities, all of our businesses can help the state achieve more by helping create job opportunities for everyone. OhioEmploymentFirst.Org has many resources that help individuals with developmental disabilities and employers connect. Ohioans are now coming to realize that every person can expect that community employment will be the preferred outcome for all working-age adults. Young people with disabilities are planning for employment options during their school years, and working-age adults can get help matching abilities and interests with workplace opportunities. For the more than 90,000 Ohioans with a developmental disability, hope has never been more in reach. Cincinnati, known for its strong communities, is especially well poised to play a major role in helping the state keep its momentum in finding employment opportunities for those who have autism, Down syndrome and other intellectual disabilities. Our state – and our communities – will be stronger for it.

22. Opinion: Disabled workers need more options, not less September 27, 2014 Last week I attended the Medicaid Home and Community Based Care conference in Washington, D.C., to learn more about changes that will most certainly transform the lives of people with intellectual disabilities. My fear is that the change will be good for some, but devastating for many more. With the Ohio economy in a fragile rebound, it looks increasingly likely that Medicaid rules changes and an activist Department of Justice effort will eliminate paid work training that allows more than 18,000 Ohioans – most with intellectual and developmental disabilities – to experience the benefits of work. Pre-vocational training centers like the ones at Easter Seals TriState are the result of family advocacy efforts to ensure that adults with disabilities weren't isolated at home, but instead had opportunities to work with their peers at a wage commensurate with their productivity. Today, some claim that work centers perpetuate the isolation of people with disabilities, and stand in the way of their finding work in the community. With the Medicaid rules changes announced this year, it appears that over the next five years, states will be required to phase out support for facilities that exist primarily to provide work opportunities for people with disabilities. The thought of what this means for the people we serve keeps me up at night. This decision will disparately impact those with the dual barriers of disability and poverty, who often do not have family and neighbors to provide a network of jobs, social opportunities and transportation assistance, and who can so easily wind up on the streets. And there are people like Yolanda, who has worked with us for more than 20 years. She has a network of friends and co-workers, a manageable commute, and is a leader who helps with agency tours. Nearing retirement age, Yolanda isn't interested in community employment or senior adult day programs – she likes her job. Or Paula, who after attending our work center for more than five years gained the confidence to pursue a job in the community and has been successfully employed for more than a year. What will happen to Paula and Yolanda if options like our work centers go away? I am unclear how closing a sheltered workshop creates job opportunities in the community for people with disabilities, or benefits the people who currently work there. With the employment rate of people with intellectual disabilities stuck stubbornly at around 34 percent for more than a decade, I believe we need to be fighting to expand and preserve employment options – not take one away. Why, at a time when all disadvantaged workers are struggling in an increasingly competitive job market, would we choose to limit options for one of our society's most difficult-to-employ populations? I strongly believe that individuals who want to work in the community should have the supports to succeed in that option. But in states where work centers have closed, there have not been significant and sustained increases in community employment. Many who used to receive pay in a work center now attend recreational day programs or perform unpaid volunteer work – or worse, sit home. We believe the people we serve deserve better.

24. The jobs of Nathan Cook and thousands of other Cincinnatians hang in the balance amid a national debate over whether $3-an-hour pay is exploitative or invaluable. He works at the Easter Seals Work Resource Center in Walnut Hills, where intellectually or developmentally disabled workers spend five to six hours a day on jobs such as assembling medical kits for clinical trials or recycling wood scraps into birdhouses. Around 450,000 disabled people nationwide, including 18,000 in Ohio and several thousand in the Cincinnati region, have jobs in sheltered workshops like the Easter Seals facility. While some earn minimum wage, others are paid according to their productivity. A series of federal decisions – from a U.S. Supreme Court hearing to a U.S. Department of Justice settlement to a Medicaid directive – could mean the end of sheltered workshops here and throughout the country. Critics say they isolate the developmentally disabled and exploit them to the benefit of the companies that hire them. The National Council on Disability argues that paying the disabled less than minimum wage is discrimination. A new generation of disabled people, mainstreamed since childhood, and their parents and advocates want them to be integrated into the larger community as much as possible. But supporters of sheltered workshops say they provide a valuable alternative for people who would be unlikely to find jobs in the community, especially older people who have worked in them most of their lives. Most employees in sheltered workshops have their daily needs covered by Social Security, Medicaid and other safety-net programs, and the workshops' advocates say workers in them don't depend on their wages the way other people do. They worry that closing sheltered workshops will send the disabled into less fulfilling activities like adult daycare. Cook and Robert Perry have both held jobs in integrated workplaces. Cook, who is 35 and lives with his parents in Newtown, stocked shelves at a dollar store for a time but was eventually laid off. He's been back at Easter Seals for three years, but has spent a total of 18 years there. His current job is overseeing quality control for the medical-kit assembly. When the boxes arrive at his station with tubes and bags, he's responsible for making sure the right components are in them, weighing and then signing off on them. "Working out in the community, you learn more than you do here," says Cook, an avid sports fan who blogs about the Bengals, Reds and University of Cincinnati teams. "But I like working this job. Whenever I have a problem, they always help me out with my situation." There are six people in Cook's line, and each performs a task suited to his or her ability. One counts off the correct number of tubes, another puts in the appropriate color-coded lids. Cook's duties depend on his ability to read and write. If the office had to pay someone minimum wage to assemble the kits, it's likely that all of the different responsibilities would fall to just one person. Though Perry has made less than minimum wage in the past, he's making minimum wage now working in material handling at Easter Seals and is eager to return to outside work. He hopes to get a job sorting recycling materials and eventually would like to work in construction, a field he's taking classes in. With a child due in January, he's eager to make and save money for all the expenses of parenthood. "That's my biggest motivation now. That's probably why I take so much time and effort to think things through in my head," says Perry, who lives in Winton Hills. While he's eager to move into a job in the outside community, he says the sheltered workshop has helped prepare him: "You learn more things here and they teach you more things. They get you ready for a regular job and I already know the standards, but it doesn't hurt to learn more." The push to close sheltered workshops stems from a 1999 U.S. Supreme Court decision that found segregating the disabled unjustifiably constitutes discrimination and violates the Americans with Disabilities Act. It accelerated the push toward community-based services and treatment in everything from housing to education to work. Sheltered workshops, some of which paid workers pennies an hour, gained a reputation as exploitative, dead-end warehouses that stunted the potential of many disabled workers who yearned to do more. Decisions by federal and state agencies have also encouraged integration, and this year the Department of Justice settled a landmark lawsuit with the state of Rhode Island that will eventually close all sheltered workshops. Medicaid officials have already released guidelines to integrate housing for the disabled, and they could issue guidelines for workplaces any day. Many states, including Ohio, are shifting to a policy known as Employment First, which establishes work in the community as the preferred option for the disabled. Managed well, the shift makes sense, since options for many disabled people have been unnecessarily limited in the past by low expectations. But as officials and advocates manage the shift, they must keep in mind that economic prospects for the disabled remain stubbornly fragile. Only about a third of disabled people are employed, compared with nearly three-fourths of the nondisabled population, and a third of the disabled live in poverty. The recent recession hit disabled employees hard, as they competed with the nondisabled for jobs. In states that have abolished sheltered workshops, some disabled workers have found work in the community, but more have not, and many who have found jobs work limited hours. Moving the disabled out of sheltered workshops and into community-based employment is a worthy goal. But even worthy goals often have unintended consequences. Protecting the rights of disabled workers – including the right to remain in long-held and much-cherished positions in sheltered workshops, if they choose – should remain the top priority for policymakers and advocates

25. Create more employment options Craig Harwood, guest columnist DECEMBER 13, 2014 | 9:11 AM The door is going to close on the Options of Linn County sheltered workshop after 40-plus years of serving a real need in our community. This program was started by parents of adult children with intellectual and developmental disabilities because of a legitimate need. As it grew, it was moved under management and operation by the county. There are not enough words to describe the depth and the breadth of good produced by this single program. It will be sorely missed. Many of the workers at Options were there because they could not work in an integrated setting, whether because of behavioral issues, physical limitations, safety concerns or other reasons. Options staff addressed all of these issues and concerns within the workshop. In the future, these workers will have to compete with minimum wage employees without developmental disabilities. Many of the current workers at Options will be unemployed. There is only one question left: what can we do now? Visit one of the local sheltered workshops like Options and see for yourself how they work. Volunteer at one of the agencies that advocate for people with intellectual and developmental disabilities. Demand elected officials change laws that limit employment choices for this community. Write letters to your congressman, the governor, the Secretary of Labor, the newspaper and others. Next time you are in a place of business, ask if they employ people with intellectual disabilities. If they say no, ask, “Why not?” Business owners and managers, find some work to send to a sheltered workshop, or hire an employee with intellectual and developmental disabilities. As it has been said, when one door closes, another opens. Although the door at Options is closing, it is now up to all of us to open the next door; these workers cannot do it alone. • Craig Harwood lives in Cedar Rapids and is married with three children, his oldest is an intellectually disabled adult working at Options of Linn County.

26. Shifting Tone from Opposition

27. Residential Services Florida Times-Union Jacksonville, Florida October 29, 2014 How big is the need? A whopping 200 people have already turned in letters of interest to live in the neighborhood. “The interest level’s off the chart,” said Jim Whittaker, president and CEO of The Arc. According to figures from the Census Bureau, there are nearly 90,000 adults in Duval County alone who have intellectual or developmental disabilities ranging from mental retardation to autism. Although many have access to apartments, they usually have little contact with other intellectually or developmentally disabled people. In contrast, The Arc Village neighborhood will surround its residents with the support of caregivers and the friendship of neighbors who share their challenges. “This is a new model of housing for the country,” Whittaker said.

28. Best Practices • Don’t wait for an interview to start preparing • Define media-worthy topics • Craft three key messages on these topics • Develop your dream headline before the interview • Your answers are far more important than the questions • Create a guideline for you/your team to follow…

29. Challenges

30. On Camera Tips • Refrain from quoting statistics • Sit on the front half of the seat • Don’t eat/drink/chew gum

31. Interview Checklist • Confirm the purpose and scope of the story • Confirm the deadline • Control the interview • Review your key messages and keep them handy • Be brief and focus on the positive • Thank the reporter and let us know how it went!

32. Recap • To translate issues into personal stories • To be “for” something • To broaden your focus to include education, employment, housing, community and long-term success • To use our media tools and the What Matters Most Campaign