DD Quarterly Winter 2003

Grim budget outlook presents opportunity for reform

That brings the total cuts of state funds for MRDD services to $47.4 million since the last budget was passed in June 2001. These cuts also translate into major cuts to County Boards; ODMRDD has few things left to cut and must pass the cuts on to counties. It also means that the new state budget for fiscal years 2004 and 2005 starts from a lower base.

Governor proposes increased taxes and cutbacks in services

• Significant cutbacks in Medicaid services, including optional services such as dental, vision, podiatry, chiropractic and some psychology services. These cuts do not affect mental health services paid for by Medicaid, or the Community Alternative Funding System (CAFS) program,
• Holding rates level for Intermediate Care Facilities for Mental Retardation (ICF/MRs), nursing facilities and hospital providers,
• Elimination of the core-plus Medicaid services,
• No growth in the Disability Medical Assistance Program,
• Requiring co-payments for non-preferred prescriptions drugs for non-pregnant adults,
• Reduction in the eligibility of low-income parents for health care benefits to 70% of poverty level,
• Requiring co-payments for prescription drugs, and
• Many other cuts to services that millions of Ohioans have come to expect or need.

Proposed budget affects ODMRDD

• Is relatively flat with only tax equity showing any significant increase.
• Calls for the closure of the Developmental Centers at Springview and Apple Creek.
• Will propose a deinstitutionalization waiver for implementation in January 2005. This would remove ICF/MRs as a required service from Ohio’s Medicaid State Plan.

Fiscal dilemma presents reasons for reforms

Despite all the posturing that is going on among policymakers, Ohio’s fiscal dilemma presents the state with a reason to consider reforms to the current system and earlier implementation of the community imperative of the Ohio Access Report.

The sooner legislators begin to realize that the "fat" is gone from state government, and that cuts at the state level are hurting Ohio’s citizens, the sooner real reform can begin.

Budget Strategy Training and Legislative Visits event popular with advocates

The event was co-sponsored by the Disability Policy Coalition (DPC) and the Ohio Olmstead Task Force, (OOTF) and was moderated by Bev Johnson, a DPC coordinator.

The days’ events included presentations by Ken Campbell of the Nisonger Center at The Ohio State University, and Doug DeVoe, executive director of Ohio Advocates for Mental Health, and director of the campaign to bring Medicaid Buy-In to Ohio.

Campbell instructed attendees on the finer points of advocating and creating strong, long-term relationships with legislators. Doing so is a continuous process made even more so by term limits for the office holders.

"Ours is a representative form of government," Campbell said. "If (your legislators’) actions do not represent that, let them know."

Campbell’s suggestions for developing relationships with policymakers included:

• Get to know your legislator in a way that is helpful to him or her. Attend their lower-cost fundraisers, or assist in their campaigns.
• Attend the legislator’s speeches.
• If you are with an organization, invite your legislator to an upcoming event so he or she can meet people and hear concerns.
• Make it clear that you are a constituent, and start voting if you haven’t done so in the past.
• Plan what you want to speak about prior to a legislative visit, and know your topic well. Be forthright, accurate and on target.
• Know that your legislator will ask something similar to, "What is the problem?" or "What do you need?" - and be prepared to answer in a clear, sincere manner.
• Don’t waste time on trivial, personal matters during a legislative visit.
• Be polite, and offer yourself as a resource on issues related to disabilities.
• Elevate the relationship you are building from time to time by sending congratulatory or sympathy cards when appropriate.
• Never negotiate away the principles of your issue. Instead, it’s okay to talk about refining the size of the proposed project.
• Always thank your legislator for his or her time and follow-up your conversation or visit with an additional written message or phone call.

DeVoe discussed the Governor’s proposed state budget that had been released the previous day.

"Keep saying to the members of the General Assembly, ‘We need to be thinking for the long term, not the short term,’" he said. "You are in the best position to go down to speak with your legislators, to tell them this is what happens to people’s lives."

DD Quarterly writer tags along on lively legislative visits - Shari Veleba

The activity was a part of the Budget Strategy Training and Legislative Visits event at the Riffe Center - home to Ohio’s State Representatives’ offices.

Kane and Alikan both have children with disabilities, so the issues of Olmstead implementation, eliminating waiting lists, and Medicaid Buy-In (MBI) are important to them. I have a disability myself, and face various challenges as an Ohioan with a disability.

"The visits really hit home to me that it’s critical that we build and maintain longterm relationships with our legislators," Kane said. She also said advocates for disability-related issues need to inform legislators that we are not a special interest group. Everyone is one accident, one disease, and one circumstance away from disability."

Equipped with the advice we received at the morning training session on how to build relationships with legislators, and well-stocked with brochures on the issues, we first met with Trisha Hershey, administrative assistant to State Rep. Tom Niehaus.

Hershey listened as we introduced ourselves and spoke about the need for community-based services.

"We don’t get very many disability issues put to us," Hershey said. With people with disabilities gaining momentum and motivation to speak out about issues and contact legislators, that will likely change.

Hershey said she talks with her boss a couple times a day about constituent concerns. "We keep a database of everybody who calls in."

Standing in the wings of our conversation with Hershey was Mike Miller, legislative aide to State Rep. Michelle Glass Schneider. Miller also listened and accepted brochures. Whenever the representative had questions or needed clarifications on disability issues, Kane offered the insights and services of disability organizations such as the OOTF.

In an elevator with about six people, one man offered to show us how to get to the Senate side of the Statehouse. As we began to walk, I asked if he was a state representative. "Yes, I am," he said, and introduced himself as State Rep. Sylvester Patton, who represents the Youngstown area.

In the Statehouse Rotunda, surrounded by paintings depicting Ohio’s history, we paused and took the opportunity to speak with Patton about Olmstead and MBI, as well as inviting him to an upcoming Legislative Breakfast - March 6 in the Statehouse Atrium.

Kane and Alikan again offered to be the representative’s contacts on disability-related issues. As he headed to a finance meeting, I walked along with him and asked about the importance of meeting with people with disabilities. "It’s very important," he said. "I represent one of the populations who are underserved - people with disabilities, and the elderly, too. This is my clientele, they are my customers."

Next, Alikan, Kane and I visited the office of State Sen. Mark Mallory. While the senator was not in, we left Olmstead and MBI information with his aide.

Finally, we entered the office of State Sen. Robert Schuler - 20 minutes early for our appointment. The senator, who represents Kane’s district in Cincinnati, welcomed us into his office.

Kane first spoke about her experience with disability by sharing a personal story. She also talked about Olmstead, and MBI as making "economic sense" for Ohio. Alikan then described the Ohio waiver system and the waiting list dilemma.

The senator was friendly, asked questions, and was interested in disability-related issues during our 40-minute meeting with him. I spoke about my experiences as a DD Quarterly writer, and the number of stories I have come across throughout the state in which Ohioans with disabilities and their families ride the wave of innovation and creativity in seeking solutions to situations that could impact many in positive ways. We all urged the senator to call upon us for information, and if he had questions. Kane emphasized she would research any answers that were not immediately available to her.

The meeting with Schuler underscored the reason why creating a relationship with your home legislator is critical. Kane and Schuler spoke about various sections of the Cincinnati area, and even knew some of the same people, building a nice rapport.

"I think once you break through the fear (of visiting a legislator), you are more inclined to do it again," Kane said. "Today went extremely well. The format of being together, getting training, doing the visits, having a large presence, and being committed to having a long-term relationship with the legislators is very good."

"I would describe the visits as very encouraging," Alikan said. "They seemed interested in our ideas and genuinely interested in what we are doing."

Our follow-up to the legislators will take many forms, including handwritten thank you notes, additional information, phone calls, and local visits.

A couple other tips I learned from our visits include: Check in early with your legislator’s secretary if you arrive early for an appointment. Others scheduled before you may have canceled, which could mean a longer meeting for you. Also, when in the Statehouse, recognize networking opportunities when they pop up. The legislator who needs to hear your message just might be standing next to you in the elevator.

Governor appoints new DD Council members from all areas of the state

Denise F. Kissel, Akron

Even as a busy Executive Assistant to an officer of a large printing company of educational products, Denise has managed to provide leadership for more than ten years to The Arc of Summit and Portage Counties, Greater Akron Chapter of the Autism Society of America, Advocates for Children Today, Ohio Legal Rights Service and several other groups advocating for people with disabilities.

Her teenage son, Caleb, diagnosed as having severe to profound autism at age four, continues to be the energizing force behind Denise’s wish to "give back as others have given me." Caleb, now a teenager, who is totally non-verbal and requires 24-hour care, has a personality that attracts people, providing natural opportunities for them to better understand people with disabilities.

Currently serving DD Council as a Special Advisor for the Children Issues Committee, Denise comes well prepared to continue her work to "change systems - and to make a difference for the thousands of individuals in Ohio with developmental disabilities."

Todd Gatewood, Coshocton

As a person who has lived with cerebral palsy since birth, Todd is a founding member of People First of Ohio, and continues to provide self-advocacy leadership to self-advocacy organizations in Ohio and across the Nation.

Describing himself as an experienced and well-seasoned advocate, Todd currently serves as an officer of People First of Ohio and serves on the board of Self-Advocates Becoming Empowered (SABE).

As a regional consultant for the Prentke Romich Company, Todd demonstrates their communication devices and is a motivational speaker.

Lyla M. Kepler, Canton

Having experienced the challenges resulting from her son’s traumatic brain injury twenty years ago, Lyla has engaged her advocacy skills for several groups including the Brain Injury Association of Ohio and the Brain Injury Association of America, both from which she has been given advocacy awards.

Lyla works as the Family Involvement Coordinator for Family Services of Stark County, and is married and mom to four children.

Recipient of several awards for advocating public policy, Lyla tells us, "I have developed a rapport with legislators that will benefit people with developmental disabilities."

Ruben Garcia, Toledo

Ruben helped create People First of Ohio, and created an employee advocate advisory committee at Lott Industries in Lucas County.

Having served as President of People First of Toledo, and as a board member of The Arc of Lucas County, and as a Rights and Responsibility Trainer, Ruben has a strong history of advocacy for persons with disabilities.

His advocacy efforts have won him several awards, including the 1999 Advocator of the Year from the Arc of Ohio and the Ohio DD Council, and the 2000 Publisher Award for the remake of the Rights and Responsibilities Book, a resource he co-wrote with another staff person at the Adult Services Center of the Lucas Board of MR/DD. The Rights and Responsibilities Book, written for people with disabilities, explains both their individual rights and respective responsibilities as adult citizens, and has been used statewide.

Mary M. Butler, Elyria

Mary expressed her delight with this appointment saying, "I believe DD Council has been on the cutting edge in Ohio for as long as I can remember."

Currently the Advocacy Liaison for the LEAP/Center for Independent Living, she has also worked as Advocacy and Outreach Coordinator there. Even having raised six children and being grandmother of 11, Mary’s volunteer experience and specialized training fill several pages. Of particular note is her service an officer of the Lorain County Workforce Investment Board, the Lorain County Transit Board, and the ADA and National Organization On Disability Committee of her county.

Mary also serves cochair of the Olmstead Task Force, and reports that she is ready to make a difference in the lives of people with developmental disabilities.

CHOICES Project helps man leave nursing home, live in community

At a rural, back road intersection, a truck rammed into his vehicle, sending him through the passenger window. Perkins was thrown 120 feet into a ravine. If that weren’t enough, a truck rolled onto him, fracturing his neck in three places and his back in four.

Perkins awoke from a three-month coma and entered the world of quadriplegia. He moved into the Heartland Nursing Home, in Centerburg, for rehabilitation and helping learn to adjust to his new physical situation. While rehabilitation efforts started as planned, they quickly dwindled.

"All I did was eat and sleep there," Perkins said. "It made me feel like my life was over...like I had nothing to live for. It made me feel terrible." Perkins ‘ate and slept’ at the nursing home for a year.

Had it not been for a chance meeting between Perkins’ sister and mother, and Anne Thomas, Perkins might still be at the nursing home.

Thomas is a team leader of CHOICES. She chatted with the two women in a hospital waiting room, and happened to mention the CHOICES Project. Perkins sister then mentioned her brother’s dilemma.

"God works in mysterious ways," Thomas said of the meeting.

She and Dan Loyer, nursing home team leader for CHOICES, soon met with Perkins and talked with him about his future. "And we took him out into the community," Loyer said.

Loyer, who also has quadriplegia, took Perkins’ case to heart. "I looked at him, and I was looking at myself," he said. "He felt he was a burden to the nursing home because they weren’t doing any training with him. I saw him needing to do something to regain his independence."

"We (CHOICES) helped him with advocacy and delegation," Loyer said. The project team gave advice, and helped with HUD applications and transportation services.

During Perkins’ nursing home stay, the facility claimed much of his income, including Supplemental Security Income.

"Now he has it all back, living in the community," Loyer said.

Perkins is pleased. "CHOICES gave me hope that someone could work with me on things," he said.

While CHOICES assisted with some things, Perkins took the lead on others, eventually finding his own accessible apartment.

Today, he visits The Ohio State University’s Dodd Hall for rehabilitation services, and continues to work toward fulfilling his dream of having a home with a workshop where he could build furniture.

"I’m a builder -I can build whatever people need," he said.

For now, he builds on his independent lifestyle, and offers encouragement to others who might find themselves living in nursing homes. "Keep the faith," he advises. "And keep your will strong." He suggests that people who cannot do things the same way they used to due to accident, injury or disability, transfer their skills to other meaningful work.

The CHOICES Project helps people living in nursing homes or developmental centers to regain their independence and live in their communities. The project is directed by The Arc of Ohio, and is funded by the Ohio Developmental Disabilities Council.

For more information, contact: Dan Loyer, nursing home team leader, (800) 303-3436 Access Code 11; loyerent@accnorwalk.com or Ann Thomas, ICF/MR team leader, (740)397-5235, annthomas@ecr.net or visit www.thearcofohio.org

Pair become friends through CHOICES Project

Martinek linked Duzna with a top Pennsylvania doctor who was able to help him. Denny and Marty became friends in the process. Martinek's three weekly visits to Lisbon were a 70-mile roundtrip. The 150-mile roundtrip to Seville, where Denny now lives, is a bit more difficult to make as often.

In appreciation for his kindness, Duzna's parents recently gave Martinek a birthday party. CHOICES staff continue working on moving Duzna out of the nursing home.

(Brochure Insert)

In 2003, Ohioans with Mental Retardation & Other Developmental Disabilities need your help to...

• Protect health and safety
• Reduce residential waiting lists
• Provide staff with decent wages
• Provide tax equity to poor counties
• Restore budget cuts and increase federal match
• Support the completion of Medicaid Redesign

Building the Foundation: Results of the MRDD Medicaid Redesign in the last Budget Bill

• Developed a six-year plan to revolutionize MRDD Services in Ohio.
• New Level I Waiver concepts have been submitted and approved.
• For the first time, local funds are available to match and draw down additional federal Medicaid funds.
• Provided an increase in Tax Equity funding in FY 2002-2003, although State funding for Tax Equity still is only approximately 40% of the need.
• Provided a modest increase (roughly 60 cents per hour) for direct care workers.
• Began reducing waiting lists by paving the way for Medicaid Waivers to provide needed community-based services to new people.

4,000 new Individual Options (IO) waivers have been obtained to date, and 6,000 additional Level I waivers have been approved for release over the next three years.

Of the original 4,000 IO waivers that have been filled thus far, more than 400 are for residential placements to relieve the waiting list. The balance of the waivers is being used to refinance existing placements to bring in more Federal dollars.

CUTS TO MRDD BUDGET HURT REAL PEOPLE!

Impact of the State’s financial situation

• Every $1 cut in state funds reduces federal funds by $1.50, and thus reduces services by $2.50. The majority of state funds for MRDD services are used to "match" and draw down federal funds.
• The reduction of state funds for the County Board Subsidy forces counties to use their local dollars to maintain current services rather than matching federal dollars and reducing the waiting list.
• Over 16,000 people are on a waiting list for residential services. Of that number, more than 6,000 are not receiving residential services of any kind at the present time.
• Each cut diminishes ODMRDD’s ability to monitor the health and safety of vulnerable citizens with MRDD and to administer the Medicaid waiver program.

Since July 2001, MRDD services have been cut over $47.4 million in state funds. This does not include the resulting loss of additional federal Medicaid funds. There is no more "fat" left in the MRDD budget.

Tell your legislators that the cuts they make are passed back to constituents in their own districts, and that the success of Medicaid Redesign is based upon the State of Ohio remaining an equal funding partner with counties (local levies) and the federal government (Medicaid).

Our Goal

This will assist elderly caregivers and individuals with disabilities, and it will allow for the provision of quality services on a statewide basis.

Members of Ohio’s Waiting List Coalition

Call to Action

1. Support completion of Medicaid Redesign by providing state match to:
• Fund more Medicaid waivers
• Continue initial steps to reduce MRDD Waiting Lists
2. Provide additional Tax Equity ($6.5 million per year) to poor counties. Children born in tax poor counties must have equal access to needed MRDD services.
3. Further improve the wages of Direct Care Workers ($9.8million per year) to enhance the health and safety of MRDD citizens. Stabilizing the workforce has a marked influence on the quality of care.
4. Restore cuts and provide a modest increase in the state Subsidy to County Boards ($17.2 million). Over the past ten years the subsidy has been frozen, while the population served by the counties has increased.
5. Continue to address the needs of aging parents with aging children living at home. Add a new priority to serve children with severe disabilities including autism.
6. Push hard for more Medicaid Waivers. The growing federal deficit suggests that the current "open window" for Medicaid expansion could be closed at any time. We must act now!

Act Now!

The Honorable Bob Taft
Governor, State of Ohio
77 S. High Street, 30th Floor
Columbus OH 43266-0601

Phone: (614) 466-3555
Fax: (614) 466-9354
Email: Governor.Taft@das.state.oh.us

Contact your State Representative (as soon as possible but no later than April 15) and your State Senator (before June 15). Ask them to support the needs outlined in this brochure. Let them know that any further budget cuts will be felt in your/their communities, and give them some concrete examples. For example, how much longer will someone have to stay on a waiting list for services; how much turnover in direct care staff have you experienced; or does the lack of tax equity funds leave your county behind others in the services it can offer.

Ask friends to contact the Governor and their State Representatives and State Senators. Share the information in this brochure with friends, and ask them to share information with their legislators about how failing to address these priorities will affect their own situations or that of their loved ones.

2003: A Fiesta Bowl Odyssey

- Ken Campbell, OSU’s Nisonger Center, former DD Council member

You see, sports fans with disabilities in central Ohio have recently become accustomed to venues that are carefully designed to make spectator sports extremely enjoyable. Take for example, Schottenstein Arena, Crew Stadium, Nationwide Arena, and OSU Stadium. For some of us, Sun Devil Stadium offered no such accommodations.

The journey began by scaling a steep hillside just to reach the entrance. Once inside, few amenities like accessible restrooms or lowered vendor counters were to be found. To top it all off the supposedly accessible wheelchair seating didn’t provide an unobstructed view of the field when fans in front of me stood - which was the entire game.

A TV set had been mounted in the area to allow me to see what the other patrons saw live. I could have watched the game on TV at home and saved a lot of money.

While nothing can take away the thrill of attending a National Championship game, the experience would be enhanced greatly if the BCS chose to hold these events in fully accessible stadiums - like our own beloved, renovated Horseshoe.

Key features of accessible stadiums: www.usdoj.gov/crt/ada/

- U.S. Department of Justice

Medicaid Buy-In has supportive voices in employee-employer team

Tracy Beckman, owner of S. Beckman Printing and Graphic Solutions, Inc., Columbus, and his employee, Drew Rouhana, spoke about their experiences at a Dec. 5, MBI Forum. Held in Columbus at the Annunciation Greek Orthodox Cathedral, the event was sponsored by the Cerebral Palsy Association of Ohio, Ohio Advocates for Mental Health, COVA, MOBILE, Arc of Central Ohio, SILC, RSC’s Columbus Consumer Advisory Committee, and DD Council.

Beckman’s wife, a nurse at Grant Medical Center, Columbus, first met Rouhana, 29, while he was being treated for a spinal cord injury and paralysis. She mentioned Rouhana’s spirit and attitude to Beckman, who later learned that Rouhana was a skilled graphic designer.

Eventually, Beckman recruited Rouhana to come and work for him. But during the recruiting phase, the two had a discussion about the Medicaid regulations that Rouhana must adhere to, and that professionally limit him.

"I was worried that it might keep him from coming to work for me," Beckman said.

Medicaid regulations limit a recipient’s assets to $1,500, Rouhana said. Medicaid coverage allows Rouhana to have one hour of skilled nursing care and two hours of care by an aide each day. These services are necessary for Rouhana to have a job and become independent.

Medicaid Buy-In is a federal initiative that gives states the option to allow workers with disabilities to "buy into" or purchase Medicaid coverage and increase their disposable income as they move toward independence and self-sufficiency.

Twenty-five states have approved Medicaid Buy-In plans and eight states have approved plans that have not yet become policy.

Ohio’s lack of participation in Medicaid Buy-In means that Rouhana cannot receive a full day’s pay for a full day’s work.

"I explain benefits to all my new employees. I firmly believe Drew deserves as much from our company as any of our employees." Beckman said at the MBI Forum. "But this is something that is out of our control. "

"I want to be able to give him a 401K. I want to be able to contribute to his health care. I want to be able to give him a raise and pay him time and a half for overtime," said Beckman.

Without Medicaid Buy-In, Beckman can’t offer any of those things to Rouhana.

From Rouhana’s perspective, not having MBI in Ohio means lost time and lost plans. "It’s hard to make any long-term goals when you are limited as to how much you can earn and how much you can save," he said.

And, it points to an irony that is hard to ignore. "State agencies invest a ton of money into people with disabilities to enable them to work, and (without MBI) they don’t get the chance to do that."

"There are a lot of individuals who are in the exact same position that I am in who can work full-time. We’re completely employable. The one thing that holds us back is medical coverage, and earning a normal wage above poverty level," said Drew.

Studies have shown that more than 12,000 Ohioans with disabilities would benefit from having MBI in place.

Beckman is convinced the MBI issue begins with employers offering more employment opportunities to people with disabilities. "I think employers see people with disabilities and it scares them or concerns them," he said. "Give them a chance to show you what they can do." Beckman said he plans to speak with small business owners on the merits of hiring people with disabilities.

"The Buy-In program really gives opportunity to and takes the handcuffs off of people with disabilities to live an independent life and provide for themselves," Beckman said.

Rouhana said that current Medicaid regulations are bad for Ohio as a whole. "It creates an environment where you try to beat the system," he said. "I have Big Brother watching every move I make - and looking at my bank account," he said.

Rouhana, who is also the president of The Adaptive Adventure Sports Coalition (TAASC), simply wants one thing with MBI: "To be able to live life as someone without a disability is able to live."

For more information about Medicaid Buy-In, contact DD Council’s MBI grantee: Doug DeVoe, (800) 589-2603, ddevoe@ohioadvocates.org or visit, www.ohioadvocates.org and click on "Medicaid Buy-In."

2002 General Election brought touch screen voting to Mahoning County

McCabe said there were some bumps during Election Day - mostly in the form of longer lines at the polls, "with people getting used to the new system. We think it will be under control in the future."

Of the county's 182,000 registered voters, 90,000 voted. McCabe said many compliments came from older voters happy with the system.

Ray Baker, Mahoning County elections board community liaison, undertook a vigorous public relations campaign to promote the new system to voters leading up to the election.

"Sample electronic voting machines were everywhere the people were," Butler said, detailing how demonstrations took place at churches, community centers, restaurants and schools, as well as through the media.

"We were at so many different events," he said. People with visual impairments frequently asked when the county will have ADA-compliant touch screens. At the present time, the county has only two of 312 precincts equipped with the machines. These machines come with headsets and additional buttons that voters are instructed to press as they hear the ballot read.

Elections Board officials hope Helping Americans Vote Act (HAVA) funds will come through to help the county pay for the additional ADA-compliant machines.

Board Chair Mark Munroe, who attended the January Ohio Association of Election Officials conference in Columbus, said he hoped to have the ADA-compliant machines in place for the 2004 presidential election.

"This implementation is a process," he said. "It's going to be a couple of elections before we get everything fully implemented."

One ADA-compliant machine is required in each precinct. Earlier, McCabe expressed concern about possibly receiving little HAVA money. "It's debatable that we'll qualify for anything, but we're expecting some money," he said.

Munroe said that should the county not receive HAVA funds, "that will make it difficult" (to equip with the ADA-compliant machines). Munroe and his colleagues gave a presentation about their experiences with the new system at the elections conference.

The touch screen machine has returned the joy of voting to Youngstown resident Cynthia Cika Pasky, who has multiple sclerosis and a head injury.

"The old way of voting was very confusing," Pasky said. "I would have to read the ballot two or three times to get through it. Touch screen voting has made it easier for me."

A regular voter throughout the years, she became nervous about going to the polls after she acquired a head injury in an auto accident. "The worst thing in the world would be to go home and wonder, did I do it right?"

The new voting machine provided a bright screen, and clear and lighted electronic ballot text. "It helped me to focus on it and become more aware of what I was doing," Pasky said.

Previous voting experiences created frustration and embarrassment for her, triggering hand tremors. "Voting last November was a nice experience. There was nothing negative about it. I don't dread voting now."

Gather personal stories

News from Ohio Legal Rights Service (OLRS)

Disability community needs to come together - now more than ever

- Carolyn S. Knight, OLRS Executive Director

The plan calls for cost containment by:

• Eliminating certain services for adults, including dental, vision, podiatry, psychiatric, and chiropractic services;
• Expanding home and community based alternatives to institutional care with costs equal to or lower than facility costs;
• Freezing provider reimbursement rates; and
• Developing a new reimbursement methodology for nursing homes.

In addition, the Director of ODMRDD has announced that two developmental centers will be closed over the next several years.

These significant changes will occur against the unknown backdrop of continued fiscal uncertainty. If Ohio’s economy does not rebound soon, revenues will continue to fall. In that event, additional cuts are likely.

Neither is the federal budget horizon encouraging. The top federal priority is national defense and homeland security. Human service needs have once again moved down the priority list. OLRS does not yet know what its federal dollars will be. The best we hope for these days, like most agencies, is level funding.

Ironically, even if an agency like OLRS receives level funding, in tough economic times the need for protection and advocacy services rises. Vulnerable groups, including people with disabilities and those with low incomes, often are impacted in a disproportional way and have little in the way of a safety net.

OLRS services will be stretched. We will face formidable challenges to assure choice, health, and safety, as individuals move from the developmental centers that will close. Medicaid redesign is likely to be affected. The competing pressure of cuts in Medicaid services and an emphasis on expanding home and community based waiver programs may prove a difficult balancing act. Protecting individual health and safety, and advocating at the policy level as changes unfold, will require more resources than OLRS currently receives.

Uncertainty and speculation often provoke enormous anxiety. As the future unfolds, the reality of what happens may produce even more anxiety. People with disabilities and their families will certainly have to fight to keep the services they have. State funding for OLRS protection and advocacy services, more needed now than ever, have been reduced. Over the last three years, OLRS state funds have been reduced by 26%.

Despite this dismal forecast, OLRS will do its best to respond to requests for assistance. However, we will not be able to meet every need. As change in the disability arena unfolds, OLRS will have to prioritize issues and focus resources in particular areas of concern. For example, OLRS will continue to work on the issues of grassroots organizations like the Olmstead Taskforce and DD Council’s Advocating for Public Policy Change (APPC) sites.

It is clear to me that we in the disability community need each other now more than ever. We need to come together when and where we have common ground. We need to share information in order to maximize everyone’s resources. Every constituency group needs to clearly identify its most vital concerns so we can all concentrate on the most important issues of the disability community. OLRS must know about the thoughts, experiences and ideas of children and adults with disabilities and their families during these tough economic times.

My pledge to all of you is that OLRS will continue to work with individuals and organizations to find the most efficient and effective ways to meet as many requests for assistance as we possibly can. We want to continue the movement toward full community participation for all Ohio citizens with disabilities.

PAIMI Council is first in nation to access funds from state mental health agency

Jerry Cohn, Chair of the PAIMI Council, reported, "From a national perspective, this is the first time a state mental health agency has funded a PAIMI Council to specifically do advocacy activities."

The PAIMI Council, in collaboration with OLRS and consumers, has historically addressed the advocacy needs of individuals receiving mental health services. Funding this project will improve Council’s ability to influence the culture within which clients and providers exist.

Carolyn Knight, Executive Director of OLRS, stated, "Within a year, and for many years after that, when the grant products are developed and disseminated, all individuals receiving or seeking services from the mental health system in Ohio will have relevant information about advocacy and recovery." Knight concluded, "This is another example of Ohio’s state agencies’ willingness to collaborate with advocacy groups like OLRS in an effort to improve services to its citizens."

Michael F. Hogan, Director of the Ohio Department of Mental Health, said, "We are pleased to provide these funds to the PAIMI Council and believe that the materials and resources developed through this campaign will assist many Ohioans with serious mental illness in their efforts to recover and lead fulfilling and productive lives."

Knight and Cohn announced that the Rights and Recovery Campaign will promote recovery and increase access to client rights and advocacy services for people receiving or seeking mental health services in Ohio. The Rights and Recovery Campaign includes five major activities:

1. Handbook

Develop and disseminate a Client Rights Handbook that is published in a variety of formats: Braille, Web version, and Spanish.
2. Web Resource

Develop an interactive Web-based resource that includes information about advocacy services, recovery initiatives, and the mental health system.
3. Video

Develop an American Sign Language video for people who are deaf/hard of hearing to provide equal access to recovery and information about rights in the mental health system.
4. Advocacy System Study

Publish a study that:

• Reviews advocacy programs in Ohio and other states, and
• Recommends practices to increase efficiency and availability of advocacy services for individuals in the mental health system.
5. Recovery Campaign and Kickoff

Promote recovery through client education and self advocacy.

PAIMI Council membership includes consumers, providers of mental health services, family members, and ex officio participation from NAMI, Ohio Advocates for Mental Health, and Ohio Department of Mental Health.

OLRS Annual Report

OLRS advocates for inclusion in communities

The community mental health agency was willing to provide a sum of money to support the client in the community, but he also needed support from the MRDD system.

He applied for a waiver slot with the mental retardation system as an emergency. The hearing officer denied the waiver, finding that the client did not meet emergency criteria for purposes of the residential waiting list because of money already budgeted by the mental health system for a portion of his care.

OLRS represented the client in an appeal of the decision. The appeal also was denied.

OLRS then continued lengthy negotiations with the local mental health agency, the local mental health and mental retardation boards, and state hospital staff to develop a discharge plan. Staff of the departments of mental health and MRDD worked with OLRS to facilitate placement. All parties agreed that this individual was not in need of hospitalization.

Even with OLRS’ extensive experience in negotiating appropriate discharges, a year of intensive interventions went by before the young man left the hospital. The main obstacle was interagency disputes about responsibility and funding.

OLRS successfully negotiated for appropriate housing, supervision, vocational rehabilitation, medication, dietary concerns, respite and recreational activities. The individual now lives in his community with appropriate supports.

Through OLRS’ advocacy, the various service providers have developed regulations for planning community placements for people with dual diagnoses.

OLRS advocates for employees with disabilities

The Ohio Administrative code sets forth a process for taking disciplinary action against a Business Enterprise operator who is not managing his or her facility in accordance with the rules and policies of BSVI. The process involves progressive discipline. One result is the temporary or permanent suspension of an operator’s license.

According to the operators, BSVI had not used this process and had just walked into an operator’s location, taken inventory of the merchandise, and closed the business. In several cases, BSVI had placed a temporary operator in the next day.

The Ohio Administrative code also sets forth when immediate removal may be used. Conditions includes:

1. When the operator is in danger of losing the facility because the grantor threatens to pull the grant,
2. Commission of a felony,
3. Health or safety of the operator, or
4. Operator abandons the facility.

OLRS successfully defended the operator at the administrative hearing when the hearing officer ruled that none of the four conditions listed above were present in the case and did not warrant "shock removal."

In another case, BSVI called OLRS and indicated that they were going to shock remove an operator and invited OLRS to a meeting to discuss the matter. OLRS informed BSVI that they had no documentation and as a result, BSVI settled the dispute and placed the operator in a better facility.

In yet another situation, an operator was provided notice of an administrative hearing prior to any action being taken. BSVI has temporarily stopped the practice of immediate removal without adequate due process. OLRS is negotiating with BSVI about changing the regulations in the administrative code.

Martin v. Taft, Negotiations continue

• Seeks community residential services;
• Specifies that state programs should not discriminate against people with severe disabilities; and
• Specifies that integrated residential services be developed.

While in the interim most other states have settled similar cases, the State of Ohio has chosen to defend Martin, and the case has been through court ordered mediation, court monitored or court ordered settlement negotiations, and several trial delays.

During the last half of 2002, the plaintiffs and the MR/DD defendants held informal discussions to explore if common ground exists that might lead to a negotiated settlement. At the least it was hoped that issues could be narrowed.

While no agreements were reached as a result of these talks, they did lay the groundwork for subsequent discussion with all parties. Because of the intense settlement negotiations the Court has vacated its pre-trial deadlines entered in November.

Significant budget initiatives announced by the Taft administration with regard to developmental centers and ICF/MR services, and the ongoing expansion of waivers under Medicaid redesign have the potential to provide significant relief to the class without the risk of trial and the delay associated with inevitable appeals.

OLRS is carefully evaluating these proposals as part of the negotiation to determine if they provide relief to the plaintiffs and the class they represent.

Death penalty update

The Court adopted the three-part test commonly accepted by professionals for defining mental retardation. The three part test includes:

1. Significant limitations on intelligence (IQ),
2. Combined with significant limitations in adaptive behavior,
3. That manifest or originate before the age of 18.

The Court, unfortunately, also created a presumption that a person with an IQ higher than 70 is not mentally retarded. This is contrary to professional thinking in mental retardation, which would argue that IQ alone should not define mental retardation. While this approach has been taken by some states, others, such as Louisiana, have recognized that all three factors must be given equal weight.

The Court also decided procedural issues regarding how this determination is made. The Court placed the burden on the defendant in post-conviction proceedings to establish that he or she is mentally retarded. At the initial trial, the process set out by the Court is similar to a competency determination, with the judge making a decision prior to trial whether the defendant is mentally retarded based on expert evaluations.

Further litigation on this question will occur, as recent U.S. Supreme Court cases have said that issues like this must be decided by a jury. Finally, the Court did not heed the brief’s call to narrow who can give an expert opinion by requiring that the evaluator have experience in evaluating people with mental retardation.

The case is reported at 97 Ohio St.3d 303, and is on the world wide web at http://www.sconet.state.oh.us/roddocuments/0/2002/2002-ohio-6625.doc

The Ohio Civil Rights Commission presents Midwest Fair Housing Summit: A Call to Ohio

March 31 - April 1, 2003, Radisson Airport Hotel, Columbus

Two-day fair housing conference will feature nationally acclaimed advocates and experts. Workshops and panel sessions will focus on a variety of current housing topics, such as credit scoring; insurance redlining; predatory lending; fair lending; public policy and legislation; economic development; and efforts to improve compliance of accessibility/disability laws.

Registration deadline: March 7, 2003. Fee: $75. For information, visit: http://www.state.oh.us/crc/hconf.htm

Clovernook/Kroger team creating nation’s first fully accessible grocery

Why not approach the company and talk about features to improve the shopping experience for people with disabilities? Kroger did just that, and in a move believed to be a first in the nation, the largest grocer in the U.S. listened and worked with the Center to provide key accessibility features, said Cynthia Jackson-Glenn, Clovernook orientation and mobility specialist.

"We just approached them with how we would like to have some input," she said.

Jackson-Glenn was most interested in conveying to the store what disability issues Clovernook could introduce to Kroger that it may not have considered: things that would benefit the visually impaired.

The geographic area surrounding the store has a higher concentration of people with visual impairments due to Clovernook’s close proximity. "People with disabilities live here because their services are here," she said. The store opened in June, 2002.

Features incorporated into the new store design include:

• Textured sidewalks near entrances providing special markings that aid individuals with visual impairments in crossing high-traffic areas.
• Weekly sales fliers printed in Braille by Clovernook.
• Lowered aisle markers with white lettering on black background to assist people with poor vision.
• A portion of the front of the store traditionally filled with vending machines was left clear as a walkway and walking guide.
• Clutter-free aisles with no troublesome displays allow for easier shopping.
• Items are kept in the same location maintaining consistency and shopping ease.

"It was a collaborative effort," Jackson-Glenn said. "We were surprised not so much at their willingness to do it, but their willingness to sit down with us and discuss our proposal, No matter how you look at it, people with disabilities are customers."

"My hope is that Kroger’s becomes an example to society," Jackson-Glenn said. "Instead of having to modify a structure, sit down with the community beforehand."

Jacquie Sammon, a Cincinnati resident and frequent Kroger shopper who is legally blind with low vision, said the accessibility features help.

"It means that I can get in there and get what I want and then get out without wasting a lot of time looking for something," she said. "It helps that you’re more independent in going to a store because you may not always have someone going with you."

Store Manager Keith Eve became involved in the project prior to becoming manager. "They wanted a store that was easy access," he said. To that end, the Kroger staff has been trained in how to assist shoppers with disabilities.

Terry Strader, a Clovernook employee who has a visual impairment, shops at the store with wife Debbie. "It’s just better at the new Kroger store," he said. "They get you whatever you need. They are good from the service desk all the way down to the checkout lines."

"I’ve always been an independent person, and this just helps me be even more independent - to know I can do my own grocery shopping, to know I can get there by walking, and know once I get there I can get what I want," Strader said. "It truly shows that Kroger is a caring part of the community and the neighborhood."

"At times, we may have multiple people with disabilities in the store, so we have several people here to help them shop," Eve said. He said other groceries could follow Kroger’s lead by training employees to assist shoppers.

The general public also is pleased at Kroger’s efforts. "The things we did were not hard to do," said Eve. Shoppers don’t mind that carts are shifted a few feet away providing a clear walking path.

Eve and Jackson-Glenn estimate the store agreed to 90 percent of the accommodations the Center requested.

Accessibility continues to increase at the store, with the recent addition of a TTY for people with hearing impairments.

For more information, contact: Clovernook Center for the Blind, 7000 Hamilton Ave., Cincinnati, OH 45231-5297, (513) 522-3860, (513) 728-3946 fax, clovernook@clovernook.org or contact Cynthia Jackson-Glenn, cjg@clovernook.org

On being belly-high in produce

-An essay by Rev. Daniel E. Young

I felt the same way when forced to take a sensitivity class designed for sighted people to better understand the experience of being blind. The class leader wrapped a blindfold around my head. Twenty minutes later, of course, I was able to see again, walked to my car and went home to live my life as a "walk-able" and "see-able" person.

What did I learn? Most of all, I learned what it feels like to know I don’t really have to face the same problems those who can’t walk and can’t see have to face. And the sensitivity gained in those sessions did peak for a couple of days, until I did lots of walking and lots of seeing. Engaged in my normal routines, I pretty much went back to living my life as I always had... worrying about my own problems.

That’s why I experienced genuine surprise when I learned some tangible, lasting lessons after ending up on my back for three weeks last Fall from leg surgery. As folks visited me and as I went out to public places, for those three weeks my typical view of the world became "belly-high".

On one laborious trip to the grocery, I used for the first time one of those motorized carts to do my shopping. As I turned the key and figured out the forward-back lever, I thought, "Hey, this will be kind of fun!" With a big smile on my face, I surged into the produce aisle confident and gleeful. The look of terror on some peoples’ faces puzzled me a bit. I swerved around one woman taking too long at the head lettuce stack and then veered in front of a guy deciding on Gala vs. Delicious apples. I wasn’t sure if they feared my driving or my obvious disability.

So I slowed down, figuring my erratic moves were the problem. But regardless of how gently I inched down the aisles, the faces above the bellies that came toward me often had either looks of aggravated inconvenience, embarrassed shyness, or determined avoidance.

Although not thoroughly shocked by these responses, having witnessed them before with friends who have disabilities, something new did happen to me. This time it was me feeling the aggravation and avoidance from folks who all towered above me.

Going through the world belly-high changes things. When walk-ables gave me their negative reactions, both conscious and unconscious, the fact that those reactions were towering over and above me added to their impact. There was almost an automatic parent-child sense of their perceived relationship to me in position alone. Coupled with aggravation and avoidance, my spatial position only enhanced the degrading parent-child sense I felt from my follow shoppers.

Call it over-reaction if you will, but in just a few minutes in that Acme Food Store I went from joyful and confident to tense and uncertain about my abilities and my position in the food market culture. And though I realize that my experience was short-term and that I soon became able to rejoin the other walk-ables in the world, something "sunk-in" that hadn’t before.

When I, a walk-able, react differently to someone using a chair than I would if he/she was walking, not only is my reaction felt in a significant way, but it’s magnified by the very spatial position in which the person using the chair finds themselves. I discovered that a belly-high view of the world comes with built-in disadvantages. And I am at least hopeful now that I will not, as walk-ables are so apt to do, forget how the belly-high view felt those few minutes between canned fruits and soap detergents.

Resources & Announcements

Multiple Perspectives on Access, Inclusion & Disability

Sponsored by: The Ohio State University & ADA-Ohio

Keynote:
John Wodatch, Chief, Disability Rights Section, Civil Rights Division, U.S. Department of Justice

Program topics:
Disability Studies
The Revised ADAAG
Accessible Housing
Disability & Identity
Job Accommodations
Web Access
Transition
Disability & Diversity and more

Cost: $25 per day. For more information, visit: http://ada.osu.edu

Accessible Temporary Events: A Planning Guide

If you are responsible for planning a temporary event such as a street fair, carnival, art show or auction, this guide will help you make the event accessible.

This manual recognizes that events are sometimes big with large operating budgets while others are small and have limited funds. Some are held in developed urban settings and others in make-do facilities or on rural sites. The advice provided reflects such differences.

As a resource for both those who are new to or already experienced with accessibility. Includes:

• The value of making temporary events accessible;
• An overview of the ADA;
• Planning strategies to help prevent discrimination;
• Typical barriers encountered by people with disabilities, both in the built environment and in communication, and solutions for removal, and;
• Methods of locating and coordinating available resources to achieve accessibility.

104pp. $7. ADA-OHIO, 700 Morse Rd Ste. 101, Columbus, OH 43214; 800-232-6446 v, www.ada-ohio.org

The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles

This handbook will help parents, dietitians, and therapists understand the connection between Down syndrome, diet, and nutrition so that they will be in a better position to guide children toward a healthier future.

The author, a mother of a child with Down syndrome and a registered dietitian, encourages parents to start teaching healthy habits early but stresses that it's never too late to start, no matter what age.

Information is divided into four sections: Building healthy attitudes; Nutrition-related concerns; Teaching healthy choices; and Learning activities.

Appendices contain cookbook lists, growth charts, activity ideas, how to calculate calorie needs, and a resource list.

352pp. $19.95 plus $4.50 S&H. Woodbine House, 6510 Bells Mill Rd., Bethesda, MD 20817; 800-843-7323; www.woodbinehouse.com

Wrightslaw: Special Education Law

Special education law is confusing and overwhelming to parents, educators, advocates, and many attorneys.

To advocate for a child with a disability, you need to know what the law says about:

• Child’s Right to a Free Appropriate Education (FAPE)
• IEP requirements and IEP teams
• Evaluations and reevaluations
• Eligibility and placement decisions
• Mainstreaming, inclusion, least restrictive environment
• Rights, and responsibilities of parents and schools
• Discipline, suspensions, and expulsions
• Safeguards, mediation, confidentiality, due process hearings.

This book helps find answers to questions about the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act, and the Family Educational Rights and Privacy Act (FERPA).

Organized into five sections each with a specific focus. Sections include key laws and regulations as well as Wrightslaw explanations and tips.

This comprehensive resource is for school psychologists and educational diagnosticians, child advocates and attorneys, school administrators - and the parents and teachers who are working in the trenches.

386 pp. $29.95 plus $4.95 S&H. Harbor House Law Press, Inc., PO Box 480, Hartfield, VA 23071; 877-529-4332; www.wrightslaw.org

The Road Ahead: Transition to Adult Life for Persons with Disabilities

This book is for youth with disabilities and their families, and for those who help them move toward a quality adult life.

Each chapter begins with a group of key questions that are addressed in the text. Topics include person centered transition planning, instructional assessment, strategies to develop skills to enhance community inclusion, career development and support, social life, quality of life, supported living, and post-secondary education.

To be used for cutting edge ideas to help students have a meaningful life after school.

224 pp. $32.95 plus $4 S& H. Training Resource Network, Inc., PO Box 439, St. Augustine, FL 32085-0439; 866-823-9800; www.trninc.com

The Braille Trail: An Activity Book

Designed by AFB’s National Literacy Center to teach sighted children about Braille and to encourage literacy among all children - sighted and visually impaired. Book offers games, activities, and a wealth of information on Braille, assistive technology used by Braille readers, and biographies of Helen Keller and Louis Braille.

It is based on the Braille Bug who happily inhabits The American Foundation for the Blind (AFB) web site at www.afb.org/braillebug. The information and activities on this site are designed to teach children in grades 3 through 6 about Braille and its many uses, and expand their knowledge of people with disabilities and the accommodations they use to lead full and successful lives.

A companion guide for instructors contains additional activities and resources. Teachers have permission to make copies of the Activity Book pages for classroom use only.

42pp. $30(pack of 20) plus $6.95 S&H. 26pp. Parent/Teacher Guide with Activity Book & Braille sheets is $24.95 plus $6.95 S&H. AFB Press, PO Box 1020, Sewickley, PA 15143-1020; 800-232-3044; www.afb.org/store

All resources listed in DD Quarterly are available from AXIS library: (800) 231-2947 or axiscenter@aol.com

SOLIDARITY ‘03

May 8-10, 2003 Hyatt Regency Hotel Columbus

Activities will include:

• More than 30 informational workshops
• Hands-on technology fair
• Displays and exhibits
• Keynote speakers
• Health and wellness fair
• Advocacy and volunteer presentations
• Dance, game room and much more!

Registration fee: $140 if postmarked by 4/1/03. Includes lunches and all conference activities. A limited number of scholarships are available for people with disabilities.

To request a registration packet or a scholarship, contact: axiscenter@aol.com or (800) 390-7396 v/tty.

Hyatt special room rate before 4/8/03 is $118 for a room that can accommodate one to four people. Call (614) 463-1234.

Solidarity is a project of the Disability Network of Ohio. DD Council is a co-sponsor.

DD Quarterly is produced by AXIS Center for Public Awareness.

DD Quarterly is available in large print and on audiocassette, upon request.

Please pass this copy to others who could benefit from it. If you, or someone you know, would like to be added to the mailing list, please call AXIS.

Toll free in Ohio, v/tty: (800) 231-2947 In central Ohio, v/tty: (614) 262-8124 Fax: (614) 267-4550 E-mail: axiscenter@aol.com

AXIS STAFF Sue Willis, project director; Vince McGuire, photographer; Kelley Femia, designer; Beth Kramer, writer/editor; Shari Veleba, writer; Rev. Dan Young, writer; Kim Ryan, audio recording; Joyce Talkowski, assistant; Donna Kinney, assistant.

Copyright 2003. Content may be reprinted upon request.

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