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DD Quarterly Fall 2005Circulation 21,422 Publication of the Ohio Developmental Disabilities Council bringing disability issues and accomplishments to the attention of Ohioans. ODDC MissionIt is the mission of the Ohio Developmental Disabilities Council to create change that improves independence, productivity and inclusion in community life for people with disabilities and their families.Visitability enters Ohio by way of Toledo.Will your town be next?The time is now for advocates in Ohio communities to take up the cause of Visitability and usher in ordinances for accessibility in their locales. Toledo disability rights advocates helped pass Ohio’s first Visit-ability Ordinance with a unanimous September 20 vote by Toledo City Council. Visitability is a term that was borrowed from the British efforts to create communities that are usable to all, including those with disabilities. It is a movement that has been gaining speed across the United States since about 1990. The concept is simple: Ensure that every home that is built in a community has at least one zero-step entrance, 32-inch doorways wide enough to allow man-euverability of a wheelchair, and one accessible first floor full- or half-bath. Shelley Papenfuse, disability rights advocate with the Ability Center of Greater Toledo and a DD Council member, helped lead the charge toward the Toledo Visitability ordinance. At the Keys to Housing Options conference October 19, Papenfuse showcased how northwest Ohio advocates worked with the system to create change in the system. “There are three principles to Visitability,” Papenfuse said. “The first is that social participation is a civil right. I should be able to go to your house and visit you, and you should be able to come to my house and visit me.” The second principle focuses on planned access as cost-effective. For instance, Papenfuse pointed out, creating a zero-step entrance in a new house costs about $150. But, to retrofit, or reconstruct a zero-step entrance in an existing home can cost $1,000. Third principle driving the Visitability movement is the empowering concept of “aging in place,” or growing older in a home that is usable as a person lives with or develops disabling conditions. In other words, it is more preferable to live in one’s own home, rather than be forced to live in a nursing home or other restrictive, congregate setting simply due to accessibility issues. “Visitability ordinances are popping up all over the country,” Papenfuse said. “And they are coming in all blends and flavors.” Some communities and counties across the nation create mandatory Visitability Ordinances with which builders must comply. Some require visitability if public funds are used in the project. Others have passed voluntary Visitability Ordinances, whereby compliance is not mandatory, but encouraged with cash incentives for builders. Still others offer home buyers monetary incentives through financial institutions for purchasing a Visitable home. The Toledo Visitability Ordinance is mandatory for all homes built with public funds. Many states have disability ordinances, and the halls of Congress are ringing with the word “Visitability” in the form of H.B. 2533, the Inclusive Home Design Act, introduced by Rep. Jan Schakowsky of Illinois. One fear home buyers have in confronting the Visitability question is that of whether the value of the home will be lowered if it is made more accessible with the three Visitability criteria, said Papenfuse. When one considers, though, that the population overall is aging, and that disabilities come with age, that argument is not as strong as some think. Having accessible features in a home would make it quite marketable as more and more people who have disabilities or who are caring for aging people with disabilities are seeking a home that is more accessible. It took advocates in Toledo four years from proposal to a finalized ordinance, Papenfuse said. “One person grabbed the ball and ran with it,” she added, noting the efforts of Wendy Wiitala, accessibility advocate at the Ability Center. The Toledo advocates did not start their Visitability campaign without planning. They sought to convey the need for Visitability to the city by clearly defining it and by explaining who would benefit from it, and what it means for people with disabilities to have a Visitable community. They also sought support from community leaders as well as those from builders associations. Strategy played a big part in the final result in Toledo: strategy as in whom to invite to discussions. From the beginning, the advocates sought partnerships with the president of Toledo’s City Council, as well as a member of council who also chaired the zoning committee. The Internet also played a role in Toledo’s Visitability Ordinance. The advocates used the information superhighway to gain information about cities that already had ordinances. For more information, contact: Wendy Wiitala, Ability Center of Greater Toledo, 5605 Monroe St., Sylvania OH 43560, (419) 885-5733, wwiitala@abilitycenter.org Concrete Change, 600 Dancing Fox Rd., Decatur GA 30032, (404) 378-7455, www.concretechange.org Elements of a Visitable Home
A Roadmap to VisitabilityBring it to your city through strong advocacy coordination
Visitability—an approach to Universal Design in Housing—Rehabilitation Engineering Research Center on Universal Design at BuffaloThis 48-page book provides a basic understanding of the concept of Visitability, including good practice examples and cost estimates for visitable features. It describes advocacy strategies for developing Visitability projects in local communities and includes a list of resources. A limited number of copies are available free from AXIS, (800) 231-2947 v/tty or axiscenter @aol.com DD Council conference promotes choice in selecting a homeOhio’s Lt. Governor welcomes guestsHousing was the focus of this year’s DD Council Annual Confer-ence. Keys to Housing Options was held October 19-20 at the Hyatt Regency Hotel, Columbus. It provided a comprehensive look at the kinds of housing choices Ohioans with disabilities have. More than 270 participants heard from four keynote speakers, attended 14 workshops, visited housing displays, and went home enthused about making their individual housing choices. The diverse audience of people from all parts of the state participated in sessions that related to their particular needs—everything from financing a home to finding a roommate, and from identifying supports to planning for a home for a son or daughter. Diane Gavin, of Canton, said she gained a lot from first-person experience at the conference. “I liked the addresses by people who have become independent,” she said. “I thought I was on the right track,” she added. “But (due to the conference) I am on more of the right track now.” Much of the success of this year’s event was due to cosponsors: the Ohio Department of Job and Family Services, the Ohio Olmstead Task Force, the Ohio Governor’s Council on People with Disabilities, and RHC. This collaboration of resources and planning enabled Council to reach a large audience of people with information about a significant issue to all Ohioans—housing. DD Council Chairman Bill Darling thanked Sue Willis, the staff of AXIS, and the planning team for producing the conference and asked attendees to begin thinking of a topic for next year. Color my room purpleAs Megan Boyle of Delaware shared her excitement about a new home with participants at the DD Council housing conference, she said, “My bedroom is definitely going to be purple!” Boyle will be the homeowner of the first manufactured home produced by Creative Living Systems (CLS), a nonprofit group spun from the Delaware County Board of Developmental Disabili-ties. CLS Director Michael Corbett said, “We figured out all the funding, and the house is going to be hers.” Boyle described her situation as a “dream come true. I won’t have to worry about being evicted….If I want the kitchen yellow, it will be yellow….My office where I sell on E-Bay will be a color that says I am a businessperson. I will be able to get ice cream out of the freezer because it will be a side-by-side refrigerator….I’ll be able to open the windows on my own because the house will be computerized. I will be more willing to venture outside on my own because I won’t have to fight with the doors or locks….I will have a fish tank without having to pay a pet deposit. I will be able to do my own laundry because the washer and dryer will be front-loading. This house will increase my independence because everything will be mine, including the bills!” To find out more about CLS and its houses, contact Mike Corbett, Creative Living Systems, 437 Dunlap St., Delaware, OH 43015, (740) 368-5803, www.delawarecreativehousing.com Partnerships may enable better housing in OhioRobert McNulty, cofounder of Partners for Livable Communities, Washington, DC, provided the opening keynote at Keys to Hous-ing Options, October 19-20 in Columbus. He challenged conference participants to think seriously about inclusive communities and what livability in an inclusive environment really means. Then he encouraged participants to seek those goals using common and uncommon partnerships. “Our communities tend to be designed around mobility, car ownership, wealth and youth— an inhospitable environment to people with disabilities,” McNulty said. About Partners for Livable CommunitiesPartners for Livable Communities works with many American communities in advancing livability in physical, social, economic and civic development. Partners recently undertook advocacy of aging in place and retrofitting communities to support vast numbers of older citizens remaining in their homes, their neighborhoods and their communities. Partners advances an “ageless community”—one that has no barriers—as we all move from youth to old age, from ability to disability, from affluence to needs. Partners is a nonprofit group, founded out of a federal agency, The National Endowment for the Arts. As McNulty explained, 30 years ago the National Endowment had a special program related to universal design and accessibility that created the momentum for Partners. The organization is funded principally by the housing industry and its financial backers. McNulty recounted several projects of Partners, revealing key ideas such as redoing suburbs to make them friendly to those without driver’s licenses; being able to age where we are; and developing communities in sustainable ways, with smart growth to save energy, use alternative energy sources and save our natural surroundings. Putting partnerships to work in OhioPartnerships increase a group’s power in many ways, from more ideas to more wealth and more political clout. Ideally, groups get together in mutually beneficial situations. So how can partnerships help people with disabilities have access to more and better housing? McNulty said banks have considerable regulation, one being the Community Reinvestment Act. The act requires banks to report each year on how they perform lending and financial services to people with special needs, currently defined by income. He asked, “Has anyone thought of modifying the act to include housing choices for people with disabilities?” People with disabilities need housing that fits their varied, individual needs. McNulty believes retrofitting of homes will become a huge growth area, especially for baby boomers who want to age in place. While designers and builders seem obvious partners in the quest for better housing for people with disabilities, other groups may present possibilities for partnership. One of those is AARP, the most powerful lobby in America. McNulty believes AARP provides an excellent possibility for strategic alliance through its local and national organizations. He said another excellent alliance would be groups connected with the wellness agenda. Environmental organizations also may be good partners, as rebuilt communities look for clean air, clean water and alternative energy sources. “As an outsider coming in,” said McNulty, “I’m telling you there are plenty of opportunities for new colleagues who will discover they need you as much as you need them. And they will see your issue not so much as a special issue but as a livability issue…defining a better community for everyone.” For more information, contact Partners for Livable Communities, 1429 21st St. NW, Washington DC 20036, (202) 887-5990, www.livable.com Helsel Awards made to Seifarth and TrierCourtney Jordan, DD Council Housing Subcommittee Chair, presented two Elsie D. Helsel Advocacy Awards on October 19 in Columbus. Recipients were Mark Seifarth and William Trier, Jr. Seifarth, of Columbus, has more than 25 years in public service, 16 of them with the Ohio Rehabilitation Services Commission. He led liaison activities with the Ohio Congressional delegation as well as other activities that led to the Workforce Investment Act and other federal legislation. Currently Seifarth is with the National Council on Disability in Washing-ton, DC, and he makes recommendations to the President and Congress to enhance quality of life for all Americans with disabilities. Jordan said, “Clearly, his efforts have furthered the mission of DD Council—improving independence, productivity and inclusion of people with developmental disabilities.” Seifarth acknowledged the work of the woman whose name is carried on his award: “In thinking of Elsie Helsel—and I did some background research on all the things she’s done over the years. I realize how much she’s done on the state and federal levels to impact folks with disabilities. I feel honored just to exist in her shadow for this award.” He urged the audience to stay persistent in their advocacy efforts, quoting from Winston Churchill: “Success is the ability to go from one failure to another with no loss of enthusiasm.” Trier, from the Cleveland area, has given more than 30 years of volunteer service as an advocate for people with disabilities with organizations such as The Center for Community Solutions, United Way, and LEAP. One of his nomination letters said his efforts with the Personal Assistance Services Cooperative ensure that personal services are available for people who need them. Another letter said that his quiet persistence is difficult to ignore! He’s a partner in the law firm of Thompson Hine and continues to be an active participant in efforts such as the Older Adult Emergency Preparedness Task Force for Cleveland. In the past, he served on disability-related boards, such as Services for Independent Living and United Cerebral Palsy. Trier said, “It all comes down to the basic support philosophy that an individual with a physical disability should be able to live as independently as they want to in the manner they want to. That’s the bottom line. That’s what every individual should be able to do, period.” Universal design means usable by allLuncheon keynoters at DD Council’s Keys to Housing Options conference, explored key ideas of universal design of homes. Richard Duncan, Senior Project Manager at The Center for Universal Design, North Carolina State University, Raleigh, and Meg Teaford, Assistant Professor, School of Allied Medical Profes-sions, The Ohio State University, Columbus, both emphasized that universal home design becomes an invisible element of a home when done well. Universal design is based on the idea that all environments and products should be usable by everyone, regardless of age, size or ability. It makes daily life easier for everyone and can make your home attractive and inviting. Universal design is equitable, flexible, and reflects simple and intuitive use. It incorporates generic construction features that Duncan hopes will become part of almost all new housing. Here are a few examples:
Newly constructed homes incorporating universal design number in the thousands rather than millions. “Yet,” said Duncan, “20 percent of the population has a disability, and we also have a rapidly aging population. Typically at 75 years of age or older, 72 percent of us have some kind of impairment. Although we’ve made some pro-gress with our housing, the situation will worsen unless we do something.” Teaford told the group about universal design activities in Ohio:
For more information about Universal Design, contact Richard Duncan, The Center for Universal Design, North Carolina State University, Campus Box 8613, Raleigh NC 27695-8613, rc_duncan@ncsu.edu; or Meg Teaford, School of Allied Medical Professions, OSU, 406 Atwell Hall, Columbus OH 43210, MTeaford@amp.osu.edu The Center for Universal Design at NC State University established Seven Principles of Universal DesignListed below are three of the seven principles of universal design. All the principles may be reviewed with photo examples at: www.design.ncsu.edu:8120/cud/ univ_design/prime_overview.htm Equitable UseThe design is useful and marketable to people with diverse abilities.
Low Physical EffortThe design can be used efficiently and comfortably and with a minimum of fatigue.
Size and Space for Approach and UseAppropriate size and space is provided for approach, reach, manipulation, and use regardless of user’s body size, posture, or mobility.
Faith calls for diligent housing advocacyIf the Keys to Housing Options workshops educated participants on how they can one day own keys of their own to the home of their choice, then the Thursday luncheon speaker told the entire group attending that housing needs to be even more visible an issue so that policy can continue to be impacted and changed to provide enough keys for all. Bill Faith, executive director of the Coalition on Homelessness and Housing in Ohio (COHHIO), encouraged advocacy professionals and consumers alike to speak up about housing. He took a moment to congratulate the Ohio Housing Finance Agency for developing universal design stipulations on those who receive its funding for housing, and said those rules are a direct result of advocates speaking out for people with disabilities. “People’s awareness needs to be raised,” Faith said. “Banks, lenders, developers…like to build it the way they want to build it.” Faith said legislators need to be kept up to date on the importance of housing issues, too. “Very few (of the legislators) even know these issues. They don’t get it. They live in districts where they have housing, everybody they know has housing. They don’t meet people that have struggles with affordable, accessible housing. You can fault them, but I think that’s our challenge.” He applauded the Ohio Department of Mental Health for taking the lead for several decades in building and providing housing opportunities for people who have mental illness. But in general, he said there is a large “disconnect” on the issues connected with the housing issue. For instance, a worker earning the $5.15 minimum wage in Ohio should not have to pay more than $268, or 30 per cent, of his or her wages on housing. But then the reality of today’s housing costs sets in. “You’d have to make $12.08 an hour statewide to be able to afford your typical two-bedroom apartment in the state of Ohio. That’s not one minimum wage job. That’s not two minimum wage jobs. You need to have decent income to be able to afford the market prices that are available for housing in the state,” he said. “And we’re one of the lowest cost states in the nation. We’re not California. We’re not New York. Our prices are not as bad as many states. But still, for those people that are struggling near the bottom, that’s where the disconnect comes.” He offered the illustration of a person with a disability receiving the monthly $579 per month in Supplemental Security Income (SSI). At the 30 per cent model, that person should pay about $170 in rent per month. “But around the state of Ohio, if you look at fair market rents for a one-bedroom unit, the average is about $505 a month. If you receive $579, you could pay your rent and have $74 left for everything else you need,” Faith explained. The key to bridging the mismatch between what people earn and the sky-rocketing costs of housing, Faith said, is dedicated advocacy. “We need to put advocacy for better public policy at the forefront of what we do and not as some afterthought when we’re done with everything else,” he said. As an illustration, Faith pointed to the day’s news of a county realtor’s board approving to double the real estate transfer tax to $2.00 in order to boost county funds earmarked for affordable housing. “The reality is that, the realtors didn’t wake up and say, we ought to help our fellow man. We advocated with them for the last six months to change their 20-year position against raising the transfer tax,” he said. The measure will generate $7 million more for affordable housing, he added. Faith said in his early days with housing, the efforts were to get the state more involved in housing. However, the Ohio Constitution limited that possibility. So in 1990 he and others worked to educate the legislators and change the state constitution. A year later, from those efforts, came the Ohio Housing Trust Fund. Money from the fund, given to nonprofits throughout Ohio, helps to create new housing, alleviate homelessness, pay for remodeling, and home repairs needed by the state’s poorest citizens. When the 2004-2005 budget was threatening cuts across the board, housing advocates instead asked for a housing task force to study the issue and an increase in funding. After statewide hearings, featuring everyday citizens who talked about what housing meant to them, the legislature increased the funding for the Trust Fund, which has continued to grow ever since, and is now one of the nation’s three largest trust funds. For information about COHHIO, contact: Bill Faith, 35 E. Gay St., Ste. 210, Columbus OH 43215, (614) 280-1984, billfaith@cohhio.org News from Ohio Legal Rights Service (OLRS)Ohio Legal Rights Service Toll-free: 1-800-282-9181 www.olrs.ohio.gov OLRS takes action to assure children with disabilities receive needed treatmentThe Ohio Legal Rights Service, an independent agency charged by both state and federal law to protect the legal rights of Ohioans with disabilities, has taken action in federal court on behalf of children who are eligible for—but are not receiving—needed medical services under the state’s Medicaid program. Many of these children had previously received services under the Community Alternative Funding System (CAFS) program, which the state voluntarily ended on June 30, 2005. According to Carolyn S. Knight, Executive Director of OLRS, “Ohio’s Early Periodic Screening Diagnostic and Treatment (EPSDT) program is a vital program for many children with disabilities who are in need of health care services. The purpose of this lawsuit is to assure that Ohio has a well-designed, fully implemented system in place where children with disabilities can apply for and receive needed treatment under the EPSDT program. The filing of this lawsuit is especially significant given the elimination of CAFS funding for important disability related services in schools and county programs for these children.” The class action complaint, filed on October 26, 2005 in United States District Court in Columbus, is brought against the director of the Ohio Department of Job and Family Services (ODJFS) on behalf of a class of Medicaid eligible children who are being denied the benefits of EPSDT. Federal law requires that state officials periodically screen Medi-caid eligible children for health problems. If a child’s screening identifies health problems, the law also requires the EPSDT program to provide necessary health care, diagnostic services and treatment that will correct or improve the health problems, even if the services are not routinely covered by Ohio’s Medicaid plan. The class action suit alleges that ODJFS violates federal law because it does not have a system in place that allows Medicaid eligible children to apply for and receive necessary treatment services from EPSDT. OLRS filed the class action with the consent of its governing Com-mission after concluding that this violation of federal law significantly impacts health care for Ohio’s children with disabilities, particularly in light of recent developments in health care service provision in this state. The complaint asks the judge to order the director of ODJFS to provide medically necessary services for the named plaintiffs in the case, three children who have disabilities and, on behalf of the class, to develop policies and procedures that set up an effective and reasonable method for eligible children to access medically necessary services under EPSDT. The lawsuit is assigned to U.S. District Judge John D. Holschuh. A copy of the class action complaint can be found at olrs.ohio.gov/ASP/HomePage.asp For more information contact Michael Kirkman, Legal Director, (800) 282-9181 or (614) 466-7264. OLRS supports Special Master’s report and recommendationThe Special Master appointed by the Judge in the case of Martin v Taft has filed his report and recommendation (R&R) to the Judge on the issues of class certification and disqualification of OLRS attorneys as class counsel. A decision by the Court on these issues is necessary after the Master was unable to mediate a settlement between the parties and the groups of objectors. Briefly summarized, the R&R states that:
Three groups of objectors, and the Ohio Health Care Association and Ohio Provider Resource Association (trade associations for ICF/MR and NF providers) as amicus responded to the R&R. All characterized their filing as a “response” rather than an objection; all, however, continue to insist that the Court should not allow plaintiffs and the plaintiff class to seek an end to the current ICF/MR program. OLRS has responded to the objectors. OLRS asks the Court to adopt the R&R without modification. OLRS argues that the Master correctly applied the law regarding class actions, and correctly recognized that without the earlier settlement (which the Court had ordered withdrawn) even the suggestion of a conflict between various groups within the class has been removed. OLRS also argues that the R&R correctly applies the law in this matter to limit class membership to those who choose to move to an integrated setting. (OLRS had argued this point in its court filings.) It points out that an attempt to limit the scope of class-based relief is actually an attempt to seek a limitation on the Court’s equitable powers under the Constitution. This is neither warranted at this stage of the litigation, nor do any of the objectors offer any case precedent or law to support such an unusual request. OLRS’ response notes that many of the comments are not based in law but rather raise general criticisms with the role of OLRS as the state’s protection and advocacy system. OLRS asks the Court to discount these responses, as they are not supported by legal argument or case citation. OLRS has requested that a trial date be set and that a pre-trial with the parties be scheduled. A ruling from the Court on the R&R will be forthcoming, and will guide the future path of the case. Do you have questions about the new Medicare prescription drug coverage?Starting on January 1, 2006, Medicare will provide insurance to cover some of the costs of prescription drugs. Anyone who is eligible for Medicare will be able to get the insurance, no matter what their income or health status is, and no matter which prescription drugs they use. How does the prescription drug coverage work?The new Medicare prescription drug insurance works like this: a person who gets Medicare prescription drug coverage will join a “prescription drug plan.” There will be a cost to be in a plan, for example, a person may have to pay a monthly fee, called a “premium.” A person may also have to pay a yearly amount, called a “deductible,” before the insurance plan starts paying for the prescription drugs. And the insurance may not cover the whole cost of the prescription drug; a person may have to pay a co-pay amount each time he or she gets a prescription drug. Each prescription drug plan has its own rules, and a person must follow those rules. The rules are things like which pharmacy a person has to go to, and which prescription drugs the insurance will pay for. What does this mean to me?When you add it all up, it is estimated that Medicare prescription drug insurance coverage will pay for about half of a person’s prescription drug costs. However, this is a general assumption and may not be true for each individual. At a minimum, you will need to identify the types of prescription drugs you currently use, their costs, and then look at which prescription plan works best for you. For those individuals receiving public benefits, there could be other issues to take into consideration. Some people, especially those who have low income and few resources, will get extra help paying the costs of premiums, deductibles, and co-pays. Many of these people have already enrolled for the extra help. Other people may need to apply for the extra help, and can do this by calling or visiting the SSA website. People who get extra help may have to pay only a little or nothing to get the prescription drug insurance. Why do I need to learn about this program?It is important to learn about the new Medicare prescription drug insurance, to see if it can help you lower the costs of getting prescription drugs. While the Medicare prescription insurance is voluntary (which means that you don’t have to sign up for it if you don’t want it), it will cost you more if you decide to enroll after May 15, 2006. But if you are eligible to get the insurance and you want it, it is also important to decide which drug plan you want, and to tell Medicare. What are Ohio’s plans?Ohio has many plans to choose from. Medicare approved 17 companies to offer stand-alone prescription drug plans (PDPs), and 12 companies to offer Medicare Advantage prescription drug plans (MA-PDs) to Ohioans with Medicare. Each plan is different. For example, one plan may cover a certain drug, but another plan does not. Or, one plan may have a higher monthly premium than another plan. It is a good idea to “comparison shop” for the plan that will help you the most with your prescription drug costs and that will fit your budget. People can enroll November 15, 2005 until May 15, 2006. It will cost more if you enroll after May 15, 2006. What if I still need help?If you or someone you know needs help deciding whether or not to sign up for the new Medicare prescription drug insurance, or which plan to pick, there are many places to go for help. Medicare sent out a handbook called Medicare & You 2006 that explains what the prescription drug coverage means, and tells which plans are available in Ohio. Medicare also has consumer brochures, on-line tools, and educational materials about the new prescription drug insurance, about plans in Ohio, and about comparing drug plans. Many of these are on the Medicare’s official government website. For example, on its website, Medicare has a four-step process to help you understand how to choose Medicare prescription drug coverage. For each step in the process, there’s an on-line tool that can help you. Medicare also is working with the Ohio Senior Health Insurance Information Program (OSHIIP) to educate Ohioans about the new Medicare prescription drug insurance. Other agencies like AARP also have information. Medicaid Prescription Drug CoverageFor information about help for paying extra costs: Social Security Administration: For additional Prescription Drug Coverage information: Medicare: 1-800-633-4227 - 1-800-325-0778 TTY Ohio Senior Health Insurance Information Program: AARP:www.aarp.org OLRS advocates for clients enrolled in collegeOhio Legal Rights Service has taken the next step in its advocacy for clients enrolled in college as part of their employment plan with the Ohio Rehabilitation Services Commission (RSC). Prior to the rule’s implementation in May 2005 (see DD Quarterly, Summer 2005, p. 16), OLRS had advocated for changes in the new “training” rule, by negotiating with RSC staff prior to the Joint Committee on Agency Rule Review hearing. Subsequently, OLRS filed an individual case in federal court challenging the rule under federal law, and represented seven individual consumers in hearings before RSC to challenge application of the rule. OLRS, with the statutory consent of the OLRS Commission, now has filed a class action complaint against officials of RSC, asking the Court to enjoin the officials from enforcing certain aspects of the training rule that deny services to eligible clients. The class is defined as: All individuals who are eligible or who may in the future be eligible to receive postsecondary training as a service as part of their individual plans for employment under the vocational rehabilitation provisions of the Rehabilitation Act of 1973... and who are thus subject to the requirements of [OAC 3304-2-58]. The case challenges the validity of the rule under the Rehabilita-tion Act of 1973, as amended, and the U.S. Constitution. It alleges that the rule violates the Rehabilitation Act because it relies on the Free Application for Federal Student Aid (FASFA) process to determine the dollar amount the consumer can contribute to her vocational rehabilitation program. FAFSA is a requirement established under the Federal Student Assistance Act, not the Rehabilitation Act. The FASFA amount is determined based on the earnings and assets of the consumer’s family, and is based on income and assets from the previous year. In other words, RSC relies on factors other than the consumer’s current financial situation to determine the amount of tuition assistance the consumer should receive. The result is to deny consumers vocational rehabilitation services to which they are entitled by the Rehabilitation Act even though the consumers are independent adults and have no right to claim the benefit of the family’s income, including parents and spouses. The rule does not allow the consumer’s counselor (VRC) to take into account the student’s individual circumstances, and does not allow the VRC to consider all relevant circumstances by means of a waiver, which violates the requirement that RSC provide individualized consideration in making determinations regarding eligibility and services. Finally, the rule requires that the student complete each academic year within an 18 month time period. It permits a waiver of that time period, but does not contain the criteria under which such a waiver can be granted. A copy of the complaint, Jackie S. v. John M. Connelly, is available on OLRS’ website: www.olrs.ohio.gov. A second case, related to the training rule, challenged a long-standing practice of RSC to deny ongoing benefits to a consumer who has appealed a change in the Individual Plan for Employment (IPE). This requirement is based on the Due Process Clause of the Fourteenth Amendment to the U.S. Constitution and is written into both federal and state law. RSC’s failure to follow the law on this issue has been noted by several courts and commented on by the federal Rehabilitation Services Administration, U.S. Department of Education. Yet the issue continues to be the subject of complaints to OLRS by consumers, and OLRS has had to file federal litigation on several occasions to obtain continued benefits for clients during the pendency of a hearing. In response to OLRS’ filing, a federal district judge issued a Temporary Restraining Order (TRO) that required RSC to pay tuition for a consumer who appealed a proposed change to his IPE based on the new training rule. In the TRO, the federal judge ruled that tuition was a “service” under the Rehabilitation Act, and that a change in the client’s required contribution was a denial of a service under that act. Accordingly, the service must continue pending a hearing. Advocacy Guide for People who are Deaf or Hard of HearingOLRS has issued a new publication titled, “Signs of Advocacy in the Mental Health System: An Advocacy Guide for People who are Deaf or Hard of Hearing.” The 24-page booklet reaches out to people who are deaf or hard of hearing to inform them about advocacy and inspire them to become self-advocates. It promotes self-advocacy as a way to solve problems in everyday life—in restaurants, in places of business, at sporting events, in recreational facilities, or in mental health hospitals. The illustrations in the booklet were drawn by Kurt Stoskopf, a freelance artist who is deaf. Stoskopf illustrated the book with people communicating in sign language and communicating through vivid facial and body expressions. OLRS developed the publication with direction and guidance from the PAIMI Council (Protection and Advocacy for Individuals with Mental Illness Council). To request a free copy of the booklet, contact: OLRS, (800) 282-9181, (614) 466-7264, or email: THemmert@olrs.state.oh.us OLRS promotes self-advocacy with FAQsOLRS protects and advocates the rights of people with disabilities in many different ways. Which kind of advocacy OLRS provides for a person depends on any number of factors. However, no matter which form of advocacy OLRS provides, the agency’s basic goal is to promote and support the individual to be a self-advocate. OLRS accomplishes this goal primarily through education. One way that OLRS provides education is through “Frequently Asked Questions” (FAQ) fact sheets. These are short publications that quickly answer common questions on disability-related issues. For example, OLRS has an FAQ that answers questions about guardianship and alternatives to guardianship, mental health issues, and a series of ten FAQs on special education. The special education FAQs are designed to empower families to advocate for their child who has a disability, even when OLRS is unable to provide one-on-one assistance. Examples of OLRS’ FAQs
Special education:
FAQs are available on the OLRS website and in print. Visit: www.olrs.ohio.gov/asp/olrs_FAQs.asp Students build accessible modular homeThroughout the two days of the Keys conference, students from the Delaware Career Center built a model of an accessible, modular home.News from Nisonger CenterThe Nisonger Center
The Ohio State University Phone: (614) 688-8472 Nisonger conducts studies for children at the Research Unit on Pediatric Psychopharmacology—By Paula RabidouxIn 1997, the National Institute of Mental Health (NIMH) established a network of Research Units on Pediatric Psychophar-macology (RUPPs) that combined expertise in psychopharmacology, child development, and psychiatry at several research sites across the country. The RUPP network is primarily devoted to conducting studies to test the efficacy and safety of medications commonly used by practitioners to treat children and adolescents (off-label use) but not yet adequately tested, but also participates in tests of newer medications and other treatments. The Ohio State University Nisonger Center was competitively selected nationally as one of eight RUPP sites, and is one of three sites in the RUPP Autism Network. In addition to the network studies, OSU RUPP has conducted NIMH and industry-funded studies addressing various childhood disorders and treatments. These treatments include classical psychotropic medicines, as well as new investigational medication, nutritional treatments, and non-medical treatments used to modify behavior in children and adolescents with autism spectrum disorders, attention-deficit/hyperactivity disorder (ADHD), and other childhood disorders. The OSU RUPP is currently conducting a variety of research studies, including the following:
A previous multisite RUPP Autism Network study conducted partly at the OSU RUPP compared placebo and risperidone in 101 children and adolescents with autistic disorder and irritable behavior. The outcome of this comparison was very striking. The results showed that the children receiving risperidone had very marked reduction in irritable behavior, hyperactivity, and stereotypic movements. The OSU RUPP, together with Yale University and Indiana University, now wish to build upon this work to see if they can bring about even larger gains in children with autism spectrum conditions (autistic disorder, pervasive developmental disorder, and Asperger’s disorder) and high levels of irritability. The current study will compare risperidone alone and risperidone paired with behavior therapy. Children will be randomly assigned—to risperidone alone, and to risperidone plus behavior therapy. This new study is for boys and girls from 4 to 13 years of age with autism, Asperger’s disorder, or pervasive developmental disorder not otherwise specified. These children should have significant symptoms of irritability (tantrums, aggression, and/or self-injury) and should be in good physical health (children with epilepsy may be included, as long as medication is stable and seizures are well controlled). For more information, contact Kristy Hall; hall.941@osu.edu or (614) 292-3698. The OSU RUPP also is working with a pharmaceutical company to test the safety and effectiveness of an investigational drug known as Oralgam. Oralgam, or oral human immunoglobulin, is a natural product that contains human antibodies. Antibodies are particles that the body forms to fight illnesses. Examples of these illnesses include measles, chickenpox, flu, and colds. These antibodies also help fight infections in the stomach and intestines. As many as 25% to 40% of children with autism experience regular stomach problems, including chronic diarrhea or constipation, vomiting, bloating, gas, or abdominal pain. It is possible that the stomach problems may be linked to behavior difficulties in such children. The study sponsor is therefore hoping that the investigational medication may improve problem behaviors as well as stomach problems in these youngsters. To be eligible for the study, a child must be between the ages of 2-17 years, satisfy criteria for autism (not Asperger’s Disorder or PDD-NOS), and have a history of chronic constipation or diarrhea, and abnormal gaseousness or abdominal pain. For more information, contact Lindsay Crowl; crowl.15@osu.edu or (614) 688-8214. The OSU RUPP is exploring whether the nutrient zinc alone or combined with medicine offers a new treatment alternative or the potential to reduce the need for medication for children with ADHD. It is the first clinical trial in the country to measure various effects of zinc on this population of children. Researchers are seeking participants for the study, which is designed to determine whether zinc supplementation improves the symptoms of ADHD and whether combining zinc with stimulant improves ADHD symptoms more than stimulant alone does. Other goals are to find whether the combination of zinc and stimulant can produce a good result with a lower dose of stimulant and whether children with low blood zinc will improve more by taking zinc than children who have normal blood zinc. Stimulant medications, such as amphetamine and methylpheni-date, have been used to treat ADHD symptoms for more than 50 years and are considered safe and effective, but individual patients often have troublesome side effects or an unsatisfactory response. The OSU RUPP has been exploring nutritional options for ADHD treatment for a number of years as possible treatments for patients who don’t respond well to the most prescribed medications for the disorder. Zinc deficiency mimics symptoms of ADHD. Preliminary work suggests the ADHD population may have a higher prevalence of marginal zinc deficiency and that zinc nutritional status may interact with stimulant effectiveness. It is possible that zinc supplementation to medication could improve a child’s ADHD symptoms more than stimulant alone. The double-blind study lasts 21 weeks, including a period when zinc supplementation is compared to placebo and an extension that will allow all participants a chance to try zinc supplementation under controlled conditions. Participating children must be between age 6 and 14 and satisfy criteria for an ADHD diagnosis. The diagnosis of ADHD requires chronic problems of inattention, distractibility and impulsiveness dating from before age 7, with symptoms that interfere with academic and other activities. For more information, contact Dawn Bozzolo;bozzolo.6@osu.edu or (614) 688-3848. Other information and resources are available on the OSU RUPP website: http://psychmed.osu.edu Project MEDThe OSU RUPP created Project MED (Medical Education for Consumers) with funding from the U.S. Administration on Developmental Disabilities. The goal of Project MED is to provide patients with information—in a manner that they can understand—about the medications that they are taking.The booklets are designed for a broad group of people taking medications: people with mental retardation, autism, or reading difficulties, patients with severe mental illness, child and adolescent patients, and people whose first language is not English (these booklets are also available in Spanish). By providing this information, the OSU RUPP hopes to increase each patient’s participation in his or her own health care. The series consists of eight booklets that were written in easily understood words to provide basic information about patients’ rights and about medications. There are few medical or legal words, and difficult words are defined. To learn more about the Project MED booklets, to order them, or to find out more information on the Internet for patients with these conditions, email: info@project-med.org or visit http://psychmed.osu.edu/projectmed.htm. In addition to the items discussed earlier, the OSU RUPP website contains information on other research studies, including contact information for prospective participants and a listing of completed research studies. Profes-sionals and families interested in childhood disorders also will find links to additional resources, which include links to preview and to order useful publications, such as A Family’s Guide to ADHD, and links to helpful organizations in central Ohio. Visit: http://psychmed.osu.edu Department representatives give updates of housing programsFor the past five years, DD Council has had the unique distinction of holding the only conference where attendees can hear—at one luncheon—from directors of the state’s departments that work with people with disabilities. This year, six representatives shared their initiatives related to housing. Some of their comments are listed below. Barbara Edwards, Medicaid Director, ODJFS: “As a recommendation of the second Access Report...and recommendations of the Olmstead Task Force and others, the Medicaid program has added a housing specialist. Kim Donica is that person...and I truly believe she is helping transform us as a health plan to better understand the role of housing and to be more effective in helping link people to housing so they can have effective healthcare delivery.” Janet Hofmann, Housing Program Specialist, ODA: “The Ohio Department of Aging is all about home and community-based services that enable people to live in settings of their choice. We’ve been working on the assistive living waiver for 11-12 years. Finally, the legislature has realized that giving people their own choice, sometimes costs less.” Judy Wortham-Wood, Deputy Director for Program & Policy, ODMH: “You’ve chosen housing (as your topic) and for us, it’s critical because we have up to 11,000 folks who are homeless and mentally ill. The good news is that we just received a grant for $14 million to work on transformation. And I’m the new governor’s appointee to lead up that project.” Mike Snow, Deputy Director of State Operated Services & Supports, ODMRDD: “Since 1991, the department has funded the development of 849 homes, assisting about 2,000 people with disabilities. And yet, that’s not enough. We continue to work with all other agencies to help people find choice, to be able to find dignity and respect, and to live in places that truly say that they are people, citizens of this great state of Ohio.” John Connelly, Executive Director, RSC: “Certainly housing is important for us all. It’s one of those keys to independence. And the key that we offer is employment. In fiscal year ‘05, I’m happy to report that we placed or assisted 7,600 people with disabilities into competitive employment.” Doug Garver, Director of the Ohio Housing Finance Agency: “We, as a new, independent agency, have a role and a responsibility to foster and to facilitate the creation and preservation and management of affordable housing. And it is in working with organizations like this that we will try to drive that mission to the extent we can.” VOICEcorps celebrates 30th anniversary, introduces new nameOne of Ohio’s nine radio reading services has entered a milestone in its history of service to people with disabilities. VOICEcorps radio reading service, located in Columbus, celebrates its 30th anniversary November 17, 2005. The broadcast station brings news and information to people who are unable to access the printed word, because of blindness or other disabilities, and who live within 21 central Ohio counties. Formerly the Central Ohio Radio Reading Service, the service changed its name to VOICEcorps last year. It is one of more than 160 reading services nationwide. Nations around the world have similar services. A team of volunteers, stream through the VOICEcorps door-way each day to do live broadcast or recorded readings of local, state, national and world-wide publications such as daily and weekly newspapers, magazines, and books. “VOICEcorps has been providing equal access to information to the community of people with disabilities well before the Americans with Disabilities Act,” said Sandy Turner, executive director. “We are fortunate and very proud that we have a solid base of volunteers (more than 250) who appreciate the importance of the service that they provide in reading news or even store advertisements over the airwaves,” added Turner. VOICEcorps is made possible through a partnership with WOSU-FM radio, by using that station’s low band, which is a segment of the radio wave not audible except through the use of closed-circuit radios. Listeners must apply for the free VOICEcorps service, and verify their disability status. Individuals can access 27 Ohio newspapers via the telephone with the Ohio Telephone Reader that is provided through a collaboration of the nine services in the state. VOICEcorps subscribers also can hear programming through audio-streaming technology from the agency’s website:www.voicecorps.org Subscribers to Time-Warner cable in central Ohio receive VOICEcorps programming on the local community channel. It also is piped into a southern Ohio veteran’s clinic and central Ohio hospitals. VOICEcorps, a United Way Agency, is part of the Ohio Radio Reading Services network that also includes stations in Akron, Athens, Cincinnati, Cleveland, Dayton, Portsmouth, Toledo and Youngstown. Old-time radio ChristmasVOICEcorps volunteers will present their annual fund-raiser old-time radio play. An Old-Time Radio Christmas—Live! will be performed Dec. 2 at 2 p.m. and 8 p.m., and Dec. 3 at 8 p.m. at the Columbus Performing Arts Center, 549 Franklin St., Columbus. The two-act play, set in 1942 wartime, will re-live the home front activities, songs, comedy and poignant memories of the time in an old-style radio studio setting. Tickets are $10 and available in advance or at the door. For more information, contact VOICEcorps: (614) 274-7650, sturner@voicecorps.org, (614) 274-9340 fax, or visit: www.voicecorps.org Governor’s Council seeks high school students for 2006 Youth Leadership ForumThe Governor's Council on People with Disabilities is now accepting applications for its 2006 Youth Leadership Forum (YLF) for high school juniors and seniors who are students with disabilities. To be eligible for this forum, students must:
YLF considers students with all types of disabilities, from learning disabilities through severe physical impairments. The forum invites students that reflect the racial, ethnic and disability diversity of Ohio. There is no cost to the students or parents for attending YLF; all lodging, meals, personal care assistance and other costs are paid by the program. The forums have been life-changing experience for many of the young people who have attended. Most delegates are eager to return as volunteer staff, and most maintain contact with many of the other delegates they meet at YLF. For many, it is the beginning of building a personal support system of other young leaders with disabilities. Former delegates often are available to speak about their experiences to groups of students. To request a speaker, obtain an application, or for more information, contact Lucille Walls, (614) 438-1393 or visit Governor’s Council’s website: www. gcpd.ohio.gov Application deadline is January 31, 2006 Make the Most of Your Money!Self-advocacy training opportunity sponsored by The Arc of OhioDecember 13, 2005 Location: APSI, 4110 N. High St., Columbus, OH 43214 This session is a cognitively- adapted training for adults who are eligible for County Board of MRDD services and other interested people. The training will help self-advocates manage their money. They will learn about banks, checking accounts, debit cards, paying bills, spending traps, saving accounts, and more. Training is free. 5/3 Bank is assisting with the presentation. To register,visit: www.thearcofohio.org ResourcesAll resources listed in DD Quarterly are available from the AXIS library: (800) 231-2947 axiscenter@aol.comConsortium for Citizens with DisabilitiesThe CCD, a coalition of over 100 national consumer, provider and advocacy organizations, advocates for national public policy to ensure the self determination, independence, empowerment, integration and inclusion of the 54 million children and adults with disabilities living in the U.S.The CCD Social Security Task Force created a set of Fact Sheets to educate people about the potential devastating effect of major program changes. Topics covered:
Download at: www.c-c-d.org Service Provider Interview Guide—2004, Ohio Department of Mental Retardation and Developmental Disabilities (ODMRDD)This guide will help you get the information you want when interviewing a potential provider—so you can get the help you need. By asking questions about the things that you consider important, you should be able to find the service provider best suited to meet your needs. Questions are divided into nine sections:
When using this guide remember that you are the decision maker and need good information so you can make an informed choice. 12pp. Download at: www.odmrdd.state.oh.us/Includes/Press_Releases/Publications_Reports.htm or call ODMRDD certification area, (877) 289-3636. Taking Charge: A Hands-On Guide to Personal Assistance Services—Revised 2005The World Institute on Disability defines personal assistance services (PAS) as: those services provided to assist people in carrying out tasks they would typically perform for themselves if a disability were not present. Taking Charge shows you how this definition has been expanded to enhance the lives of people of all ages and enable them to more fully live lives of independence and inclusion within their community. This manual is designed to make the process of setting up your own PA support system as easy and painless as possible. The information and checklists will help you in your search for a PAS provider, whether it is an employee of an agency, a privately hired individual, or a family member. It will help you to determine what you need and how to pay for it; know how to hire and supervise your PAs; and understand your responsibilities as an employer—how to schedule and train PAs, protect yourself (background checks, bonding, firing) and taxes. “This is an excellent resource for people who don’t really know where to begin or are just starting out. It is also for family members who don’t know where to turn for resources or even know what questions to ask. It is meant to be personalized and space is provided on the pages to make this truly your own guide to getting what you need and what works best for you,” said Katherine Foley, Program Director, Attendant Training Programs, Linking Employment Abilities & Potential (LEAP). This is the first revision of the manual produced by the Ohio Personal Assistance Services (PAS) Coalition, a diverse group of PAS consumers, family members, service providers, and representatives of governmental agencies brought together through the PAS Project of the Ohio Developmental Disabilities Council. Coalition members shared a common interest in improving and increasing PAS options for all. 114pp. Free. Fatica Ayers, ODDC, 8 E. Long St. Suite 1200, Columbus OH 43215, (800) 766-7426, www.ddc.ohio.gov If you experience disability related air travel problems, call one of these numbers toll-free 1-800-778-4838 voice Hotline for Air Travelers with Disabilities DD Quarterly is funded under P.L. 106-402 in accordance with the goals established by the Ohio Developmental Disabilities Council (ODDC) and administered by the Ohio Department of Mental Retarda-tion and Developmental Disabilities (ODMRDD). Endorsement by ODDC, ODMRDD and/or AXIS is not necessarily inferred. Stay Connected
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