News from Disability Rights Ohio is the monthly newsletter from Disability Rights Ohio, providing information and updates about case work and activities of the agency, and other disability-related news.
When Benjamin Wetterer was three, a family doctor said that he had pervasive developmental disorder, also known as autism. It was the severity of this diagnosis and Ben’s significant behaviors and lack of social interaction that led a teacher at Ben’s early intervention preschool to say to a colleague, “He’ll never make it out there.” He didn’t know that Ben’s mother, Virginia Wilson, was watching from and observation room, nor could he hear her response: “We’ll see about that.” Virginia, who is now an attorney at Disability Rights Ohio, has a talent for seeing things that other people don’t, one that has helped her to sustain a vision that Benjamin would learn to talk, read, and enter the world of employment as an adult.
Virginia’s high expectations for her son didn’t come from denial about his challenges. In the days before Ben began applied behavior analysis (ABA) therapy, a type of intensive individualized therapy meant to enforce positive behaviors and teach skills, Virginia says, “I was covered with bruises. He’d pour everything on the floor and burned up three microwaves. He’d run into the street and lay down. He broke many windows. He was frustrated, because the communication just wasn’t there.” Even once the therapy began, Wilson admits results were slow-going. When they began ABA therapy, it took one therapist to keep him from leaving the room and another to do the drills. Progress was literally measured in minutes, as one of Ben’s first goals was to sit in a chair for one minute.
"Until he was three or four years old, we weren’t sure what he could and couldn’t understand.” Virginia remembers when she first realized Ben did understand what was going on. A speech pathologist was asking Ben to turn the pages of a book, and Virginia remembered thinking, “He can’t do that. He’ll never do what she is asking.” When he suddenly complied with the therapist, Virginia realized that he “knew what was going on” and needed to be engaged on his own terms.
Once it was clear that communication was the most significant need for Ben, the family began to teach themselves American Sign Language and taught Ben in turn. At meetings with Ben’s school team, there was sometimes pushback on teaching him sign language in order to continue to work on talking. Wilson recalls insisting, “He’s got to have some way to speak for himself.” That insistence has paid dividends. “Between signing, fingerspelling, and learning to talk at age 15, Ben can communicate most of what he needs now,” Wilson reports.
Once the family was able to find staff who were committed to his growth in the long-term, there was fertile ground for progress. But Ben’s behavior and frustration made it hard for the family to find long-term service providers to work with Ben. Many providers quit after a short time, unable to handle the stress of Ben’s aggressive and difficult behavior: some didn’t even make it through the interview process. Regardless, cultivating those team-members that would become constant to Ben’s life was so important to Virginia and her husband that she developed some simple ways to keeping providers to work with Ben. She chose people who were creative and positive and open to working as a team and she’d cook for the weekly team meetings to brainstorm ways to help Ben learn.
Virginia admits that finding and then trusting staff was hard but rewarding. “I was overwhelmed, so I was happy to have other people there,” she says. “On the other hand, I was very conscious of what they were doing with him, and I was stayed with new staff until I knew I could trust them and they felt comfortable working with Ben.” She realized that she could not do this alone and truly believes “it takes a village.” Many of Ben’s providers have worked with Ben for a decade or more, and even those who no longer work directly with him still keep in touch with him and will take him to the occasional restaurant or movie. “They have really become part of the family.”
As happy as the Wilsons were to see these amazing gains, the idea of employment seemed to sneak up on Ben’s mother. “We were so focused on making sure he was safe and could communicate that this was new to us,” says Wilson. In sixth grade, the only types of “employment skills” that Ben’s school suggested for him involved folding towels. Wilson was adamant that, though the path might be difficult, something more fulfilling was out there for her son.
In high school, Ben participated in a community based employment training program where he was given the opportunity to regularly volunteer at a variety of workplaces in the community. One of them was at a local Jo-Ann Fabrics store. However, Ben had difficulty working in that setting because he did not like getting glitter on his shoes, so the team arranged for a different job for Ben, understanding that he needed the chances to fail and succeed at different jobs, the same as any other teenager. His school team, which included his vocational teachers, occupational therapist, speech therapists, transition coordinator and a Bridges counselor through Bureau of Vocational Rehabilitation (BVR) program, regrouped and arranged for Ben to try additional job experiences. Ben now uses his acute organizational and reading skills to sort books and videos into multiple bins at the Columbus Metropolitan Library for transfer to the various branches, and is able to keep up with his co-workers doing the same work. He’s also assembled boxes for Jet’s Pizza and Donatos. Ben’s family is hoping that after graduating from high school this spring, he’ll work half-time at a small natural grocery store close to their home. A recent two-hour trial visit went extremely well, and the store has agreed to arrange for a longer job trial to see if this will be a good employment fit for Benjamin.
Ben’s employment training experiences have resulted in visible improvements to Ben’s behavior and demeanor. Many people with autism struggle with a process called generalization, the ability to learn from one specific life experiences and then apply it broadly to others. “When he was little, there were times we couldn’t go out much,” Virginia says. “But you’ve got to get out in the world. Since being given multiple experiences in the community both with his home providers and job experiences in the community, he’s learned to generalize really well. He’s flexible. He’s had some meltdowns, but we never used that as a reason to stop trying.” In particular, the family has noticed Ben’s incredible progress towards independence. “Now that Ben is older, he can wake up in the morning and entertain himself for 45 minutes to an hour or so without having to wake us,” she explains. “We could never have imagined that a few years ago.”
While the family have been pleasantly surprised that employment fit Ben so well, they never once considered an alternative such as a sheltered workshop. “In a sheltered workshop, Benjamin would be doing repetitive behaviors. I know he would have behaviors because he would be bored. He thrives on being in the community and being part of the community. We really needed to push for some of the gains we’ve made in in getting him the skills to be part of his community. He’s definitely happier.”
At some point in the next few years, Ben hopes to leave his parents’ home and live in a supported apartment with one other person who has a disability. He admits that the idea makes him somewhat nervous, but spoke with an uncharacteristic seriousness when asked what he’d tell another person with a disability who is afraid to make the transitions he has. “Just go,” says Ben.
Disability Rights Ohio envisions a day when all people with disabilities can live, work and play in the community. This is the second in a series of articles that will highlight people with significant disabilities who have had success living and/or working in the community with appropriate supports. Read the first article in the series
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Virginia Wilson will tell you that she’s been with Disability Rights Ohio for nearly 13 years. If you dig a little deeper, though, you’ll find that it’s really 15 years: two years as a law clerk when she was in law school, followed by a stint as an attorney in the consumer protection division of the Attorney General’s (AG’s) office and 12 years as a stay-at-home mom, and then 12 years as a special education attorney at DRO.
In law school, she didn’t know exactly what kind of law she wanted to practice, but she knew it would be something related to civil justice. “That’s kind of my personality, helping people,” she explains. Special education, however, was a perfect fit.
Wilson never planned to be a stay-at-home mom, but being on the road at the AG’s office took her away from her daughter too long and too often. Then her son was born, and he ultimately was identified as a person with autism. She returned to work when he was 10.
She believes her experience as the mother of a child with disabilities helps her to understand how the families of her young clients feel.
“I know where they’re coming from,” she says. “It’s intimidating to go into an IEP meeting and have all of these people talking about what’s in the best interest of the child, what the school will do, what the teachers will do. I try to educate families about how to operate in the system, how to advocate for themselves.”
Because Disability Rights Ohio is client-directed, meaning that the agency represents the desires of the person with the disability, she’s also sometimes the only one in the room who is advocating for what the student wants.
“I think people appreciate having someone just say what they want,” she explains. “Even if they’re not likely to get what they’re asking for, just that act of being a voice for people is important.”
Although she does the same type of work every day, representing students in special education cases, she enjoys figuring out the puzzle of each case. Thinking back over the years, the hardest cases stick out for her.
“When you get through the ones that are really complicated, you feel good,” she says. “You know you’ve really made a difference for that person. It’s really satisfying to see progress because the student got services he or she needed.”
Adults with disabilities are more than twice as likely as those without disabilities to have inadequate transportation. In addition, many modes of transportation including buses, trains, and taxi cabs remain inaccessible to people with disabilities. Instead of creating a universal system that works for all, the focus has been on developing alternative transport systems, including paratransit or specialized cab services. These services not only segregate people with disabilities, but they have often been demonstrated to be inferior to general transportation services. Research has demonstrated that even with civil rights protections and the enactment of the Americans with Disabilities Act (ADA) nearly 25 years ago, inclusion is still not a priority in design of the built environment. Designers concede that the ADA and universal design have benefits, and they seek to comply with the law, but the majority have not adopted the underlying spirit of the landmark civil rights law*. If those who design systems ignore the spirit and essence of the ADA, it will be impossible to embed the principles of equity for all in our transportation systems.
In response to the pressing need for more information and advocacy on the issue of transportation, Services for Independent Living and Disability Rights Ohio partnered with PolicyLink and the Leadership Conference Education Fund to host a Transportation Forum in Parma, Ohio, on March 31, 2015. The purpose of the forum was to serve as a catalyst to educate the wider community about transportation, begin to create a vision of what an equitable transportation system would look like, and identify barriers to equity and begin to identify ways to address those barriers, and to establish a workgroup that would continue to work together to achieve those goals.
More than 125 attendees were present representing, local and regional transportation providers, aging and disability professionals, vocational rehabilitation, mental health advocates, other health and human services, civil rights, legal advocacy, researchers, legislators and policy makers. Also at the table were self-advocates representing the mental and behavioral health, aging, intellectual disability, vision disability, Deaf and hard of hearing, physical disability communities. Individuals attended the event from across the state of Ohio, including representation from Toledo, Cincinnati, Columbus and eastern Ohio.
Attendees worked together to establish principles that should guide the future of transportation and identified key issue areas that need to be addressed. For more information, please read the summary report.
If you would like to be kept up to date on recent transportation advocacy work in the Cleveland area, please contact Kathy Foley at email@example.com.
* Sherman, Sarah and Jean Sherman, “Design Professionals and the built environment: encountering boundaries 20 years after the Americans with Disabilities Act” Disability and Society, 2012, 27:1
Cleveland Plain Dealer – Transportation for people with disabilities has persistent gaps
Disability Rights Ohio recently released a three-part report on Sexual Abuse of Individuals with Developmental Disabilities. Brief One explores the factors in Ohio's developmental disabilities system that contribute to individuals' vulnerability to sexual abuse and provides recommendations to address these factors. Brief Two focuses on support services for individuals with developmental disabilities who experience sexual abuse and provides recommendations for ways to improve those services in Ohio. Brief Three discusses the gaps in the statewide criminal justice system that prevent full enforcement and prosecution against abusers.
Read the combined report: Sexual Abuse of Individuals with Developmental Disabilities: Analysis and Recommendations for Ohio
Disability Rights Ohio began to research the problem of sexual abuse of individuals with developmental and intellectual disabilities after receiving many complaints from self-advocates and their families. DRO's research uncovered patterns in the statewide developmental disabilities system that lead to unnecessary vulnerabilities and barriers to justice for individuals with developmental disabilities who experience sexual abuse. The reports have been produced with support from The Disability Abuse Project, the Ohio Attorney General's Office, the Ohio Department of Developmental Disabilities, the Fairfield County Board of Developmental Disabilities, The Arc of Ohio, People First of Ohio, The Ohio State University Nisonger Center and The University of Cincinnati Center for Excellence in Developmental Disabilities (UC UCEDD).
All Sides with Ann Fisher (WOSU Columbus) – Abuse of Developmentally Disabled Individuals - See a transcript of the show [PDF]
Columbus Dispatch - Disabled crime victims to get more help from the state
Ohio lawmakers are nearing the end of the state budget process. They are choosing how much money to spend on supporting people with disabilities to live in their own communities. They are also talking about how to run programs for people with disabilities in the future. People with disabilities, just like other Ohioans, can contact their lawmakers to tell them about their views, opinions and wishes. The Ohio Senate Finance Committee is currently reviewing the budget and hearing from the public on a host of issues. The Senate will be completing its review and voting on the Governor's budget recommendations in mid-June; at that point the House and Senate must agree on a revised budget and send it to the Governor for his review and signature by June 30. The Governor can accept the House and Senate budget, veto the whole thing, or choose to line-item veto certain parts of the budget.
People who want to know more about the state budget process or how they can speak to lawmakers during these hearings can visit DRO's State Budget Resources page, contact the DRO intake staff at 800-282-9181, option 2, (TTY 800-858-3542) or contact their state legislators:
The Ohio House of Representatives recently passed a bill to promote the awareness of service animals in Ohio. The bill was written with the help of Chris Cooley of Guide Dog Night Out (see DRO’s June 2014 newsletter for more information on that organization). The bill will now head to the Ohio Senate for its approval. If the bill is enacted, the last week of July will be designated “’Service Dog Awareness Week’ in recognition of the important role service dogs play in enhancing the lives of citizens with disabilities.”
In December 2014, the federal government passed the Achieving a Better Life Experience (ABLE) Act to allow people with disabilities to save money tax-free. The ABLE Act allows savings beyond the current Social Security or Medicaid asset limits, enabling people with disabilities and their families to save for disability-related expenses, such as education, housing, transportation, employment support, health, prevention and wellness costs, assistive technology and personal support services. In order for people to open ABLE accounts, each state must pass laws and regulations to establish the ABLE program. Ohio House Bill (HB) 155 and Senate Bill (SB) 147 are working their way through the Ohio General Assembly to create those regulations in Ohio so that our state can begin to offer ABLE accounts. DRO will continue to carefully follow these bills as they progress through the Ohio legislature.
A student with disabilities in Northeast Ohio wanted to attend prom with her dad, but the district denied the request, citing its rule prohibiting adult dates. DRO Executive Director Michael Kirkman is quoted in the story. [Ed. note: The student was allowed to attend the prom.]
Chronicle-Telegram – Family of special-needs student seeks Amherst prom age-limit exception
Amendments to the Ohio House budget bill stripped out many provisions that would have set Ohio on the path toward better community integration for people with disabilities. DRO provided a written statement in response to the changes.
Columbus Dispatch – Disabilities proposal removed from state budget
The Ohio Department of Developmental Disabilities held a forum in Williams County on Wednesday, May 27 to discuss the ongoing changes in the DD system. DRO Executive Director Michael Kirkman is quoted in this article by Bryan Times reporter Josh Ewers.
Bryan Times - Ohio's relationship with people with developmental disabilities is in flux
A skilled professional with a physical disability was denied accommodations by her company that would have allowed her to have shorter work hours. Instead, she was placed on long-term disability. After her disability leave period ended, the individual wanted to return to work, but her employer continued to deny her request for a shorter work day. She contacted Disability Rights Ohio for assistance in resolving the employment discrimination that was preventing her return to work.
A disability rights attorney assisted the client in filing an Equal Employment Opportunity Commission (EEOC) complaint and represented the client in negotiations with the employer. DRO was successful in the negotiations; the client received a financial settlement and DRO received attorney fees that will help it to further its work on behalf of people with disabilities.
We believe people with disabilities should be allowed to participate in the community and have a say in how they live, just like people who live without a disability. There is always more to do, but we need your help.
Disability Rights Ohio can now accept donations via PayPal. You can find the PayPal button on our Donate page. Please consider making a donation yourself or come up with a creative way to raise money for our cause. Thank you so much for your support!