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.
- Higher Expectations, Good Supports Lead to Job Success for Elana Novick
- DRO Outlines Programmatic Priorities for Federal Fiscal Year (FFY) 2015
- Staff Profile: DRO Intern Justin Martin Hopes to Normalize Disability
- DRO Raises Concerns about State Transition Plan for CMS Rule Changes
- Toledo-Area Parents Invited to Discuss Special Education Experiences Feb. 13
- DRO, ABLE file complaint with Department of Justice on behalf of Spanish-speaking parents, students
- Bills to Watch: Congress and the Ohio General Assembly Get Back to Work
- DRO in the News
- Client Advocacy Outcomes
- Help us keep the victories coming! Donate online to Disability Rights Ohio
Elana Novick loves people, animals and working. She also has significant disabilities: she can’t read, has difficulty with fine-motor skills and struggles with impulse control. She expressed a desire to take advantage of community vocational services, but both her school, while she was in high school, and the county DD board, after she graduated, were not receptive to the idea. They offered her work in a sheltered workshop.
Elana’s mother, Jane Novick, would not accept segregated employment as Elana’s only option. She advocated that Elana be given the chance to explore her vocational interests and go out for job trials. The school begrudgingly complied but reported that Elana performed terribly at each work site. When Jane followed up with each job site, however, she was told that Elana was a good worker. It seemed to her that the people in charge of vocational services had already decided where Elana belonged. They refused to see her potential.
“Unless you fit a certain mold, you were slated to go to a workshop or a segregated dayhab program,” Jane explains. “They had a set idea, and they didn’t bother to think that anyone could do more than that. Dealing with attitudes was the real problem.”
Elana visited the sheltered workshop but refused to return. So, Jane took matters into her own hands and found Elana a position in the cafeteria at Miami Valley Hospital. Initially, it was a volunteer position, with Jane acting as her job coach. Eventually, the county DD board provided a coach, who ultimately didn’t work out.
“The first job coach we got was from the workshop, and Elana wasn’t making any progress, so I demanded a different job coach,” Jane recalls. “The hospital had already hired other people with disabilities. They had job coaches through their Head Injury Return to Work (HIRE) program who believed in her. The coaches were used to working with people with traumatic brain injury who had former work experience, so they never discounted her. It was like an internship, and she had to prove herself. Elana, even with her limitations, is very smart in her way, and she did really well.”
Jane, her husband and the job coach came up with some simple accommodations to help Elana get through the day. Because she can’t tell time, for instance, they purchased a Time Pad, which allowed them to record audio messages like, “Elana, it’s 1 o’clock. Time for lunch,” giving her greater independence.
After just two months, Elana progressed so much that she no longer needed a coach at all. She was hired at above minimum wage and worked two to three days per week. Over time, she built a natural support network of friends at the hospital who watched out for her and ate lunch with her.
“I did the silverware, stocking, cleaned tables and talked to people,” Elana remembers. “I LOVED my job. I miss it. There were nice people there. I have a whole lot of friends. Everybody treated me really nicely.”
When Elana left her job at the hospital in 2008 to be closer to her sister in New York, her friends threw a going-away party that was attended by more than 100 people. Over the Thanksgiving 2014 holiday, her parents took her to Miami Valley Hospital to visit, and they were stopped in the halls constantly.
“She left that job six years ago, and people were still so happy to see her,” Jane says. “That tells you how much she was loved.”
When asked what advice she would give to others about community-based employment, Jane challenges parents, service providers and employers to raise their expectations of what people with disabilities can do.
“Don’t prejudge your child just by their label,” she insists. “Look at their strengths, don’t just focus on their limitations. Like any person with or without a disability, you do an assessment of your strengths, weaknesses, likes and dislikes, and you come up with jobs. I think it’s the same thing for any of our children. One of my kids isn’t good at math, so she picked a career that isn’t about math. Another daughter is good at math, so that’s what she did. It’s no different. Don’t set your sights low. We want our sons and daughters to reach their fullest potential.”
Another critical piece is providing good supports. Jane knows that part of Elana’s success was simply having people who believed in her, who were willing to take the time to train her well.
“It’s like anything else. If you train someone properly, they can work through it. People there were willing to give her a chance. Their attitudes and having the right job coach made all the difference. Imagine what could happen if everyone had that.”
Disability Rights Ohio envisions a day when all people with disabilities can live, work and play in the community. This is the first 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.
Each year, Disability Rights Ohio makes decisions about the kinds of work that will be its priority in the coming year. The FFY 2015 priorities include eight issue areas: Community Integration, Employment, Education, Abuse and Neglect, Health Care, Access to Counsel and Improving Administrative Hearings, Representative Payee, and Policy and Communication.
The priorities are posted on the DRO website.
It’s easy to forget that Disability Rights Ohio Intern Justin Martin is still a high school kid. The 18-year-old Hilliard Darby High School senior is smart, well-spoken and driven. As a participant in the John Glenn School of Public Affairs High School Internship Program at The Ohio State University (OSU), he will spend nine hours each week of spring semester at DRO’s offices, learning about disability advocacy, policy and communication. The program gives high school students the chance to get experience working in the public service sector while also taking a six-credit-hour course at OSU.
Martin, who has cerebral palsy and uses a motorized wheelchair, says he was interested in DRO because of his personal experience.
“I’ve been bumping up against disability advocacy and policy my entire life,” he says.
Although it isn’t his goal to become a full-time, professional advocate, he wants his career to help advance the disability rights cause, much like Ellen DeGeneres has done for the LGBT community.
“People need to have disabled people in their living rooms every day,” Martin explains. “It’s important to normalize disability.”
Last school year, Martin had the opportunity to teach three periods of 11th grade Advanced Placement Language and Composition for two weeks, including creating the curriculum. He chose to teach some literature by and about people with disabilities. For many of the students, it was the first time they’d seen the world through the prism of disability. The experience made Martin realize that he didn’t have to choose to be either a disability advocate or an English teacher and writer. He could be all of the above.
“It was really great to see the lightbulbs going off in their heads,” he remembers. He wants more people to be exposed to those sorts of stories, specifically from people with disabilities themselves. “Until we have that multiplicity of voices in the stories we tell, things aren’t going to change much.”
Last summer, he spent two weeks at Kenyon College’s Young Writers Workshop with other young people from a variety of backgrounds. For the first time, he didn’t have to worry about the transportation problems that often come with using a wheelchair. He could go to someone’s dorm room and play video games or go to the dining hall for something to eat. He felt empowered and included. Although he just started his internship, Martin has had a similar experience in the DRO office.
“There is a respect here for people with disabilities,” he says. “Everyone treats me like a regular person. No one freezes when I come into the room, and no one expects a cookie for being relaxed. That only comes from spending time with and listening to people with disabilities.”
The state of Ohio last month released its proposed Transition Plan for home and community-based services (HCBS) in response to new federal rules issued by the Centers for Medicare and Medicaid Services (CMS). CMS has defined “home and community-based settings” for the first time in these new rules, and within five years states will only be allowed to spend Medicaid waiver funding on services in these types of settings. Each state must provide a Transition Plan to CMS explaining how it will comply with the new rules over the coming years and must first provide an opportunity for the public to provide input on its plan.
These new CMS rules and Ohio’s Transition Plan are a wonderful opportunity for people with disabilities, families, advocacy organizations and providers to work collaboratively with the state of Ohio to create a system that supports people with disabilities in their chosen goals, allows them the ability to live and work and spend their days integrated in our communities, and maximizes their independence and autonomy.
The public comment period for the plan ended on January 23. Here are some important points DRO raised in its own comments:
- The opinions of people with disabilities and their families should be the most important part of Ohio’s Transition Plan. Ohio did not include their input in deciding whether certain types of residential and non-residential waiver settings should be considered home and community-based settings. People with disabilities, families and advocates should be involved at all levels of this process. Each person with a disability enrolled in a waiver program has a unique and important perspective on whether the settings in which they are receiving services actually is integrated in and supports access to the broader community, provides them opportunities to engage in community life, and allows them independence in making life choices, as is required by the rule. Their viewpoint is essential.
- These new rules are especially important to make sure people can receive employment and day services in integrated settings if they would choose to do so.
- Ohio placed too much reliance on provider self-assessments to determine whether a setting is home and community-based or not and in deciding which settings require on-site evaluations. Their opinions are helpful, but their perspectives often differ from those of people with disabilities and their families, and should be only one part of the Transition Plan. Ohio should plan on doing on-site evaluations for a broad sample of settings, regardless of the provider’s self-assessment of compliance with the new CMS rules. And they must speak to people with disabilities in these settings and their families to get their perspectives on the services they receive.
- Ohio needs to commit to ongoing education about the new CMS rules, what changes to the system will happen in the coming years, and the rights of people with disabilities to live and work and spend time in their communities. There has been a lot of confusion and misinformation.
- There are some settings, like those that have the effect of isolating people with disabilities enrolled in waiver programs, that will undergo “heightened scrutiny” by CMS. Ohio must include people with disabilities and the public in determining which settings cause isolation from the community and how it defines isolation. It cannot rely solely on a provider’s self-assessment of the way a particular setting isolates people from their communities.
- Ohio needs to create a plan for increasing capacity for the types of things people with disabilities will need to be truly integrated in our communities, including housing, transportation and community employment.
DRO will continue to monitor the state’s plan and report on progress and continued concerns in future newsletters.
Disability Rights Ohio, Family Voices of Ohio and the Arc of Northwest Ohio will host two open forums on Friday, February 13, 2015, at Toledo Children’s Hospital in the Croxton Auditorium of the Legacy Building. Parents of students with disabilities are invited to discuss their child's experiences with special education services, and DRO will provide information about its Doe v. State of Ohio class action lawsuit.
The forums are scheduled for 10 a.m. to noon and 6 to 8 p.m. Participants should attend only one session. Space is limited. Register by sending an email to Tonya at firstname.lastname@example.org. Childcare is available to those who register in advance. More details are available on the event flier.
Find answers to frequently asked questions about the Doe v. State of Ohio lawsuit in our publication, Special Education: Doe v. State of Ohio Class Action Lawsuit.
Disability Rights Ohio and Advocates for Basic Legal Equality (ABLE) filed an administrative complaint with the U.S. Department of Justice on behalf of Spanish-speaking students with and without disabilities and their families. The complaint alleges that seven school districts throughout Ohio and the Ohio Department of Education (ODE) are failing to provide translated documents and qualified interpreters for students and parents with Limited English Proficiency (LEP), as required by federal law.
School districts are legally required to ensure that parents who speak little to no English are able to meaningfully participate in their child’s education. When students and families are unable to participate in the learning process due to a language barrier, it is the school district’s responsibility to provide translations and interpreters.
“The school districts and ODE are failing to provide translation of critical educational documents and appropriate interpreter services,” says Disability Rights Ohio Senior Attorney Kristin Hildebrant. “Their failure makes it nearly impossible for the parents and children in the complainant class to participate in their educational programs. For students with and without disabilities, this can mean not getting the services the children need to succeed in school.”
The complaint asks that the ODE and the school districts be required to adopt policies and procedures that ensure LEP students and families have meaningful educational access. These policies include appropriate training of school district staff; effective identification of language needs of LEP students and parents; a guarantee of qualified, available interpreters and written translation; and monitoring and oversight by ODE. The U.S. Department of Justice will review the complaint and decide whether to conduct an investigation.
Columbus Dispatch – Special-ed parents demanding Spanish interpreters
Toledo Blade - TPS hit over equal access
In January, a new session of Congress and the Ohio General Assembly began, which means that new bills will be introduced, new policies will be considered, and new opportunities for self-advocacy will be available. Disability Rights Ohio is always on the lookout for bills that could impact people with disabilities and opportunities to educate and inform lawmakers about that impact. The Bills to Watch column in this newsletter is a good way to stay informed about important or controversial policy issues being considered by lawmakers.
Keep an eye out for the Bills to Watch column next month and contact DRO for self-advocacy help and support. In the meantime, contact information for Ohio legislative representatives can be found at these links:
Find your Ohio State Representative (bottom left corner of the screen)
Find your Ohio State Senator (bottom left corner of the screen)
Columbus Dispatch reporters Rita Price and Ben Sutherly spoke with parents who are concerned about the state’s turn toward community integration in response to new federal rules issued by the Centers for Medicare and Medicaid Services (CMS). DRO Director of Advocacy Kerstin Sjoberg-Witt is quoted in the story.
Columbus Dispatch – Families fight community-care plan
An ordained minister who uses a wheelchair received a recommendation from his therapist to transition to a standing power wheelchair to allow him to independently manage the symptoms of his disability, improve his range of motion, decrease risks to his health, independently stand to meet and speak with people and interact with his environment, and then also be able to sit down to work at a desk.
He requested the medical equipment from both his primary health insurance and Medicaid, which was his secondary insurance. Together the two insurances covered most of the required parts, but both denied several necessary pieces needed for the client to use the chair. The individual contacted Disability Rights Ohio for assistance in appealing the decisions in order to obtain the necessary equipment for him to be healthy and also successful in his chosen profession.
A disability rights attorney gathered information, reviewed the client’s documents, his insurance policy, Medicaid guidelines and conducted legal research. The attorney provided information and advice to the client regarding his right to appeal the denials to both insurances and requesting prior authorization through his Medicaid waiver. Because the client was under age 20, the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) Medicaid Program was applicable to him, and the attorney contacted the prior authorization unit at the Department of Medicaid to speak with them regarding medical equipment included under the EPSDT law. She also worked with client’s physical therapist to submit supporting documentation.
Using the information and advice provided by the attorney, the client filed an internal appeal through his private insurance, and he also requested a Medicaid state hearing to appeal Medicaid’s denial of his prior authorization request. Just prior to his Medicaid state hearing, Medicaid approved all remaining items.
The client continues to progress in his profession and, with the standing power wheelchair, will be able to perform his ministerial responsibilities with independence and dignity.
FAQ on EPSDT
FAQ on Prior Authorization
Help us keep the victories coming! Donate online to Disability Rights Ohio
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.
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