DD Quarterly Summer 2003

Dateline NBC’s John Hockenberry urges conference audience to "Get your stories out!"

More than 800 people with disabilities from throughout Ohio gathered for Solidarity '03 at the Hyatt Regency in Columbus, May 8-10. John Hockenberry, Dateline NBC reporter and award-winning journalist, presented the opening keynote speech. He urged people to "get their stories out" to broaden disability awareness.

Frequently humorous, he kept the audience laughing throughout while delivering a talk rich with meaning and insight. "I define disability as a window," he said. "It’s a window on culture. It’s a window on what humans are capable of."

He said he’s attended disability-related conferences in years past, but found that the wheelchairs he saw then were all the same, with identical technology. Hockenberry uses a wheelchair.

"What you notice here (at Solidarity) is that there are so many different pieces of equipment," he said. "Vehicles, gadgets - ‘Hey, look what I can do,’ or ‘Hey, look what I’ve figured out,’ what’s for sale, what’s available."

"It shows that our stories are coming to the fore," he said. "We’re landing on the beach; we’re on this big Mayflower ship, and man, we are at Plymouth Rock!"

He described his morning ride to the airport and an exchange he had with a limousine driver after transferring from his wheelchair to the vehicle.

"So I put this in the trunk?" the driver asked, referring to Hockenberry’s wheelchair. He told the audience his thought: "No, let’s just leave it here," he said. "I need to travel light. Are you available to carry me in the city of Columbus all day?"

"It always amazes me when people look at me and don’t see an integrated person with a chair," he said. "I think a lot of us project in our day-to-day lives that we are completely at one with this disability experience, and we hope it translates," he said. "We hope that people get it." He thinks Americans without disabilities might feel more comfortable if they thought of themselves as people with disabilities who are just away from their chairs.

Hockenberry described his experience of being hit by a bus in Chicago as he crossed the street using his wheelchair. He was safe, but his chair was crushed. He still remembers how he mourned for his wheelchair’s hurt, because it is a part of him, and his life.

Observing a disability isn’t the same as having one

"As courageous and extraordinary as Christopher Reeve’s story is, I think no one would pay as much attention to him if he didn’t project to the able-bodied audience that somehow he’s a kind of insurance policy," he said. "That if he can figure out the ‘cure’ thing, then people don’t have to worry about diving accidents and car accidents. Reeve’s tantalizing quality as a person with a disability is more relevant to people who look at disabilities, than to people with disabilities."

Stories must be told

"This experience is a rich experience," he said. "It’s not a dead end."

The stories must come out, he said, "That we are in the community, we are part of the community. It’s not up to others to let us into the community. We are already here."

Hockenberry cited the government as an important audience. "We have to project to the government - to the establishment - that these (disabilities) are the tiniest details of our lives."

He said, however, that legislative challenges exist throughout the nation, including in Ohio. "There are extraordinary challenges for people with disabilities."

Self-perception is important

As a pre-toddler, one of Hockenberry’s children used his wheelchair as a prop to help her stand, while the twin sister took longer to take her first steps. He guessed that the twin thought every person used a wheelchair, and "She was waiting to get her own chair."

He suggested his childrens’ acceptance of his wheelchair is the attitude that should prevail in our society. That the wheelchair serves a purpose, and that it should not disconnect or disqualify any individual.

Middle East vs. U.S.

In his travels to the Middle East to cover news events, Hockenberry noticed that people readily sought to assist him up steps while in the United States, people are more apprehensive to help and vaguely know about the Americans with Disabilities Act.

"People are actually inclined to be helpful in the United States, but our legalist view of the world keeps people from doing something," he said. "In America, (wheelchair users) get help with elevator doors, but something you actually need help with? People are afraid to engage in that," he said.

"In the Third World, it takes five seconds to gather 30 people to take you anywhere," he said.

In the U.S., "People don’t necessarily like to break out of the world that they’re in," he said. "It’s very individualistic. It creates barriers that don’t exist in other cultures."

Palestine, he said, has one of the most aggressive disability advocacy movements of the Middle East, although its office on disabilities is not accessible to people using wheelchairs. People in other nearby nations live more sheltered lives.

He also touched on anger of Americans with disabilities as perceived by those without disabilities. "Anger is a sign of a civil rights struggle taking place," he said. "For someone to accuse you of being angry is a sign of somebody wanting to ignore that there’s actually a problem to be solved."

Conference welcomes four-legged friends

For more information, contact: Circle Tail, Inc., 8834 Carcy Ln., Pleasant Plain, OH 45162, (513) 877-3325, www.circletail.org

Solidarity participants give $366,384 of volunteer service to their local communities

On the first day, Joyce Clemons, of the Ohio Department of Mental Retardation and Developmental Disabilities and a member of the Solidarity Planning Committee, emceed a plenary session about volunteerism by people with disabilities.

John "Vinnie the Volunteer" Hannah of People First of Ohio opened the session with a a rousing version of the song, "Y-M-C-A!"

Panelists included William McCulley, FirstLink, Columbus; Diane Reising, The Volunteer Center of Erie County, Sandusky; Caroline Markworth, Goodwill Columbus’ Volunteers Express; and Mary Beth Moore, Columbus Recreation and Parks. Each encouraged participants to get involved in their communities.

Throughout the conference, attendees pledged to volunteer for various causes in their local communities. The pledge cards were collected at the People First of Ohio display, where brick by brick a wall was dismantled - symbolizing breaking down the barriers to volunteerism - and revealing photographs of activities people could do in their cities and towns.

At the conclusion of the conference, the total volunteer hours pledged - and their total value - were announced. Clemons said 105 people pledged to volunteer 1,795 hours per month. The total value of those hours came to $366,384! And more pledge cards are being mailed in.

Conference Manager Sue Willis, of the AXIS Center for Public Awareness, Columbus, said the volunteer pledge project will be monitored to see how the efforts progress. Those who turned in pledge cards may be called to give an update on how things are working out.

Claire, a 14-year volunteer and member of People First of Ohio, said, "I love volunteering. If you help somebody during the day, when you go home you feel so good inside."

Volunteering has the power to transform, strengthen and build a community, said McCulley. He said volunteerism has long been studied by FirstLink, and volunteer centers throughout the nation.

If you look back on the American heritage, we are a very proud country that was founded on volunteerism," he said. Early settlers created communities and assumed positions according to their talents in order to serve people, he said.

"As we have progressed as a technological country, and have grown in population and development, we have changed our notion of how volunteerism is working," he suggested.

"FirstLink and the other 23 volunteer centers in Ohio are concentrating on finding ways to keep people - including people with disabilities - involved in the community," McCulley said. "What makes our country move and function is volunteers."

Markworth explained that Volunteers Express is a program that matches people with disabilities with members of the community who help them maintain their independence by "being a friend, helping read mail, help with paying bills, and other tasks that need to be done," she said.

Goodwill Columbus also has two SAGE (Senior Additional Growth Experiences) programs, in which seniors with disabilities are linked to various volunteer opportunities in central Ohio.

Reising spoke about her experiences developing volunteer projects for students with severe disabilities in northern Ohio. She admitted that at first, she was hesitant to form a volunteer group of students with behavioral difficulties, but she quickly learned that they, too, were nervous about the endeavor.

"These kids had issues of their own, but they wanted to take their time out to give to somebody else," she said. "What they did made a difference."

Moore asked attendees to think about volunteering at a recreation center. The Columbus Recreation and Parks Department operates similar to centers across the state.

Moore said people with disabilities could take part in Adopt-A-Trail programs, or gold, arts, outdoor adventure programs, or festivals.

McCulley said a good volunteer is someone who wants to get involved and cares about what they’re doing. "Find within ourselves the things we know we can do - and like to do," he advised. Then put yourselves to work.

Leader of Disability Vote Project says, "You are the sleeping giant of Ohio politics"

Dickson presented the Friday keynote speech to Solidarity '03 attendees, informing about trends in voter turnout and innovations on the horizon intended to provide equal access at the election polls.

"I am blind," he said. "I have never cast a secret ballot. I have wondered, every time I vote, ‘did that person mark the ballot the way I chose?’"

Dickson said people with disabilities need to change organizing strategies, "to lift voting up to the top of our agenda."

"We all say we want change, but change can be difficult," he added.

"Because of the Help America Vote Act (HAVA), I will be able and you will be able, by 2006, to cast a secret ballot by yourself at the polls," he said. "HAVA provides for one accessible voting machine in every polling place in the country."

Remove barriers to voting

"There are access problems, there are transportation problems," Dickson said. "But there is also the fact that we (as a population) are not registered to vote."

People with disabilities are under-registered by 16 per cent compared to the rest of the population, he noted. "And most important of all," he said ,"is nobody asks us to vote."

That will not change, explained Dickson. "We are going to have to organize and mobilize and turn out our own vote."

"When I say ‘we’ I mean ‘you,’" he told the crowd, who listened intently to his message.

Dickson said every type of group in the country establishes voter registration drives, voter education drives, and get-out-the-vote drives. "You must do that in your communities," he stressed.

While transportation is a major barrier for people with disabilities, he also said those with disabilities need to organize transportation systems to help get people to the polls on Election Day.

Increase voter turnout

In all, 14 million people with disabilities voted in 2000. "That was still a much lower turnout than there is for the able-bodied," he said. "It’s very simple to turn out voters. We simply have to ask our sisters and brothers if they are going to vote? Do they need a ride?"

Such non-partisan activity can be performed within the limits of non-profit organizations. "It is legal; it is appropriate for a non-profit to call or mail every one of its consumers the week before the election and say, ‘Are you going to vote?’" he said.

The act of voting must be connected to the issues that people with disabilities care about. "If we want to restore the Medicaid cuts, we need to vote. If we want adequate, accessible housing and transportation, we need to vote."

The friends, families and other supporters of people with disabilities also need to respond to and vote to support those types of issues, he said.

Dickson said people with disabilities are a very cohesive group because they think about disability when choosing candidates. "When we get folks to the polls, that will have elected officials’ attention, big-time."

Former Vice President Al Gore carried the disability community by a comfortable margin in the 2000 Presidential Election. Former President George H. Bush carried the same group by even larger numbers. Bush, who signed the Americans with Disabilities Act into law in 1990, campaigned on the issue and caught the attention of those with disabilities.

Include voters with disabilities in polls

Even so, people with disabilities are ignored when it comes to public opinion polling. "Candidates don’t identify us, the political parties don’t identify us as a group. This is extremely important," he said.

When those with disabilities are not considered a group, the issues important to them are omitted from public discussion. "Why is it that we have to beg candidates to do a white paper on their disability policy?" he asked.

"Polls tell candidates which groups to go to during the campaign," he said. "We need to grow up and deal with politics as it is, not as it should be."

Just as race, income, education, party and candidate preference are included in public opinion questions, Dickson said a question regarding a person’s disability status should be added.

Dickson summed up by urging attendees to contact their congressional representatives and press for full funding of HAVA, now that it is law. "We cannot allow our nation to be humiliated again because of a broken election system," he said. "With your work we got the legislation passed. With your work, we’ll get it fully funded."

Ohioans with disabilities provide testimony at public hearings on voting reform

People with disabilities voice concerns about accessibility and poll worker training

To be eligible to receive HAVA federal funds, Ohio has established a fund in the state treasury, and is in the process of developing an implementation plan.

Fulfilling the requirements of the law and implementing the state plan may require states to make legislative changes as well as changes in administrative practices. Citizens, especially people with disabilities, should be involved in each of these processes.

Over the past two years, news coverage of the voting reform issue often has made it seem as if most voting problems will be solved by the purchase of new voting machines. This is simply not true. States, including Ohio, need to overhaul a wide variety of election procedures in order to bring about true voting reform that includes people with disabilities. Secretary of State Kenneth Blackwell appointed an implementation planning committee that is chaired by Dana Walsh, Director of Election Reform.

The committee has met three times, taking public testimony on two days. On April 3, eight advocates for people with disabilities testified to request and support a statewide, standardized definition of accessibility and for a standardized disability awareness curriculum for poll workers.

Ohio’s current status in meeting the HAVA requirements, according to Secretary of State, Kenneth Blackwell, is as follows:

• The secretary of state’s office has established an election reform account exclusively for the receipt and disbursement of HAVA funds.
• Ohio has secured an initial $5 million in federal funding for HAVA administration and punch card and lever voting machine buy outs. These funds have been deposited in the election reform account and an additional $35 million is expected in the coming weeks.
• The secretary of state’s office is currently waiting for the Elections Assistance Commission to establish a date when final draft plans may be submitted so that additional federal funds to meet HAVA requirements may be released.
• On May 7, 2003, the secretary of state received proposals from 11 vendors bidding for a contract to design a statewide voter registration database as required by HAVA.

As of this writing, there is no ADA specific, statewide definition of accessibility, no mention of people with disabilities in the demographic information, and no requirement for statewide poll worker sensitivity training related to people with disabilities.

While HAVA includes numerous provisions aimed at restoring voter confidence in the election process, the requirements of most interest to people with disabilities and their advocates include:

• HAVA allocates $850 million to provide accessible voting. It mandates one accessible voting system in every polling place by January 1, 2006. Washington provides 95% of the cost. HAVA allocates $100 million to the U.S. Department of Health & Human Services (HHS) to make polling places physically accessible in the respective states, but there is no national definition of "accessible" or a deadline for implementation. There is no state match. Grants will be awarded competitively by HHS to the states.
• HAVA also provides the protection and advocacy system $9.3 million a year to provide education and technical assistance in implementation of the law. The P&A is expressly forbidden to use these funds for legal action. The national protection and advocacy system has recommended that each P&A use some of its funds to hire a voting rights organizer.

Voting is a basic American right and the Help America Vote Act offers hope for the elimination of the barriers to the polls, such as inaccessible voting sites or ballots, or lack of voter registration services.

For information about how you can help make HAVA a reality in Ohio, contact: Disability Policy Coalition, toll free (800) 429-8885 v/tty.

"Access to Freedom" attracts advocates to Statehouse

The morning event was co-sponsored by the Ohio Statewide Independent Living Council, the Ohio Olmstead Task Force, and featured award presentations to Ohio legislators for their support of issues and proposals important to people with disabilities and their families.

Legislative awards went to State Rep. Sally Conway Kilbane, and State Rep. Lynn Olman. Letters of Recognition were presented to Sen. Robert Spada; Rep. Gregory Jolivette; and Rep. Gary Cates.

Rep. Michael Skindell, who represents the west side of Cleveland, said he attended the event to learn more about the issues. "To show my support," he said. "We need to preserve the programs that give assistance to people with disabilities in our communities."

Skindell said he is familiar with disability through a relative who has Multiple Sclerosis. "I see the struggles he has on a daily basis," he said.

State Rep. Clyde Evans said he attended to "Show my support for the Council, and to become more sensitized to some of the needs."

Jacqueline Fowler, of Akron, took part in a Feb. 4 legislative training and visitation event, and returned for the breakfast. "(Legislators) had a lot of good things to say," she said. "They looked like they were listening."

Meg Kane, of Cincinnati, and co-chair of the Ohio Olmstead Task Force, said such events "Emphasize again that the legislators are responsive to our needs. They recognize that our work is making for a better Ohio for all of us."

Solidarity workshop looks at abuse

Panelists included Peg Calvey, of Genesis House Domestic Violence Shelter; Tuesday Ryan-Hart, Ohio Domestic Violence Network; and Tamara Burnett-Penny, Specialized Services Principal of the Ohio School for the Deaf.

"People with disabilities are victimized 11 times more than others without disabilities," said Calvey. She said there are many types of victimization, including domestic violence, robbery and theft.

"To be a victim," Ryan-Hart said, "you don’t necessarily have to have a black eye. There are aspects that aren’t as dramatic."

Audience members considered ideas about victimization - from identity theft to others taking advantage of your finances as they help you budget.

Verbal abuse, such as name calling, was cited as a form of abuse that also can become emotional abuse.

"It makes people feel very belittled," Ryan-Hart said. "It hurts our emotions and our feelings. It’s not just someone losing their temper. It’s a pattern."

Emotional abuse can be masked in a variety of actions, such as threats of harm, or threats to deprive people with disabilities of their medications.

"Verbal abuse usually leads to emotional abuse," Calvey said. "In the cycle of violence, that usually happens."

One attendee asked if a caretaker who also was a driver would be considered abusive if he drove recklessly while taking the person with a disability somewhere.

Calvey said such actions could be cause for reprimand. "If you’re frightened, and you think that maybe something bad has happened, I’d:

• "Say what you have to say,
• "Write what you have to write,
• and tell the people you need to tell," she said.

Domestic violence occurs if the perpetrator is someone in your family, or someone with whom you are in a relationship.

"It might be a boyfriend you’ve been with six months, or two weeks, or a wife, or a parent or cousin," Ryan-Hart said.

"Unfortunately, that happens quite often," she said. "It shouldn’t happen, because we should be able to trust those we love."

Physical abuse occurs when a person uses his or her physical strength to hurt you, such as being punched, kicked, scratched, or having an arm twisted. Other examples of physical abuse include being restrained, or being overmedicated as a behavioral control.

"Just because you love someone, and you think that they love you, too, doesn’t mean that they can’t be abusing you," Ryan-Hart said.

Sexual abuse occurs if a person continues or forces sexual activity upon another who does not want to take part in that activity.

"We, as a group of people with disabilities, have a tendency to keep everything inside of us and not share the facts," Burnett-Penny said. "Laws are becoming stronger and stronger every day to help us protect ourselves."

Abuse can make a victim feel shameful, she said. "If someone in your family, someone you’re in a relationship with hurts you physically or threatens to hurt you, you have the right to call the police."

A protection order, an official document obtained from a judge, says that a threatening person is not allowed to come in contact with you, Ryan-Hart added.

Reporting a crime starts with telling someone you trust.

"You don’t have to suffer in silence if someone is abusing you," Ryan-Hart said. "It really is an issue you can talk about and get some help for."

The panelists also reviewed how to identify a safe person to discuss the issues and seek help. Look for:

• Someone you absolutely trust with your life. Someone with whom you are comfortable speaking.
• Someone who understands and values you and believes what you’re saying.
• A resourceful person who is going to listen and be able to help you get assistance from police, a counselor, or an agency that specializes in helping victims of crime.

For more information, contact: Ohio Domestic Violence Network, (800) 934-9840 voice, or (800) 781-9654 tty.

If your situation is an emergency, dial 911.

Cheers abound in Solidarity Game Room

Boy Scout is veteran of Solidarity duties

Solidarity '03 marked the third time Christopher Tener, 16, of Circleville, has taken part in the conference. Throughout the years, he has learned a lot about helping others, and about people with disabilities.

"When I first came to Solidarity, I thought there were not that many people who have disabilities," he said. "I have (since) learned that there are a lot of people with disabilities."

Tener said the typical person doesn’t understand the value people with disabilities bring to society. "People don’t realize how unique and diverse people with disabilities are," he said. "The people at Solidarity are so nice and appreciative," he added.

"You shouldn’t categorize people with disabilities (in negative ways)," Tener said.

To spread public awareness of individuals with disabilities, Tener gives presentations to organizations about his experiences as a Scout at Solidarity conferences.

He said his duties at Solidarity have helped him to learn more about some of his own family members, too. "I have two cousins who have mental retardation," he said. "(At Solidarity) I get to know even more what their lifestyle is like."

State’s budget to go to conference committee

• $30 million to fully fund PASSPORT senior services over the biennium;
• $20 million for student intervention at schools under academic watch or emergency;
• a compromise on child care funding that preserves eligibility for parents who are at least 165% of the poverty level.

A key concession sought by Democrats was the maintenance of Medicaid coverage for parents up to 100% of poverty. Gov. Taft had proposed scaling back coverage to save money as part of a broad-based package of Medicaid reforms. But the availability of federal money contingent on preserving eligibility proved to be the edge advocates needed to reinstate $33 million in state share spending.

"This will ensure Ohio receives all of the $771 million in federal dollars to which it is entitled," said Senate Finance Chairman Bill Harris (R-Ashland).

The most important amendment in HB 95 may be Sen. Fingerhut’s amendment to fully fund PASSPORT. This amendment passed unanimously.

Additionally, there was general agreement to look at introducing a separate bill on Medicaid Buy-In after the budget is passed. However, when the bill goes to conference committee (composed of three representatives of the House and three representatives of the Senate) significant changes will likely take place. The announcement from the state’s fiscal office that tax collections are lower than expected means that budget crafters will have to cut programs or raise taxes before the bill heads to Gov. Taft’s desk by the end of the month.

Other items in budget:

• MRDD - increases funding for Protective Services.
• Small increases for Family Support Services.
• Mental Health - funding increased by $11.8 million (what Director Hogan called the minimum amount necessary.
• Aging - increases Senior Community Services line item and earmarks it for Visiting Nurse Association; restores language allowing state long term ombudsman to investigate complaints against community based long-term care services providers involving people under age 60.
• RSC - restores matching state funds for Vocational Rehabilitation programs in the Personal Services Line Item; small amount was added for an Office for People with Brain Injury.

It’s still not too late for you to let your legislators know what issues are important to you. Despite the smaller number of legislators directly involved, you can still have impact on the process through your State Representative and State Senator. Watch for current information about the budget in your local newspapers, and check "Budget Update" under www.state.oh.us/ddc/whatsnew.htm on the Ohio DD Council website.

News from Ohio Legal Rights Service (OLRS)

Special education requests rank first

In federal fiscal year 2002, special education cases represented one of every six individual OLRS cases. OLRS received many more requests for help but did not have the resources to provide direct representation.

When staff or dollars are not available to meet all special education requests, OLRS makes every effort to provide self-advocacy materials. The special education publications described on page 14 help to fill this gap. They are written for parents to increase knowledge about services and rights and to enhance self-advocacy skills.

Mediation

At mediation the parties agreed that the district would provide the student with compensatory education for up to two hours per week of extended school-year services from either a private provider of the parents’ choice or the public school. The district also agreed to contract with an independent expert to assess educational programming and provide feedback to the IEP team.

Negotiation

The student had a history of seizures and behaviors in school that interfered with his learning. The school had been trying to address his behaviors through a severe behavioral handicap program that had not been successful.

OLRS helped the parent investigate whether the child was eligible through the traumatic brain injury (TBI) category. In the process, the child was evaluated with the understanding that a TBI may be the root of his learning difficulties. School representatives received training on TBI and seizures and possible behaviors stemming from those disabilities.

After the training and evaluation, the team determined that the child was eligible for services under TBI. The district is pursuing an assistive technology grant to acquire some advanced assistive technology for the child.

The child’s regular education teachers voiced a greater understanding of the behavior they have been seeing and a greater understanding of what to do so the child can learn. The district also addressed modifications and accommodations to the child’s curriculum to better address his needs due to TBI and seizures. Since then, the child’s behaviors have improved markedly, and he is making progress in school.

These four easy-to-understand booklets, developed by OLRS, provide information and advice about education and services for children with special needs.

Some are available in print. Call (800) 282-9181. All are available online: www.state.oh.us/olrs

Transition Planning for Students with Disabilities

Negotiation Skills for Parents: How to Get the Special Education Your Child with Disabilities Needs

First Steps: Early Intervention Services for Infants and Toddlers with Delays or Disabilities

Special Education: Putting the Pieces Together

Advocates and family members should contact their elected representatives to make known their views on these bills and on educating students with disabilities.

Congress addresses IDEA

On April 30, 2003, the federal House of Representatives passed a bill (H.R. 1350) to amend and reauthorize a 28-year-old law that helped ensure that children with disabilities received a free, appropriate education in the least restrictive environment.

The Senate has its own idea of what the law should be and has not yet voted on its version. Some of the House changes are significant.

The 1975 law, often referred to with the acronym, "IDEA" (Individuals with Disabilities Education Act), focused on education and rights of students with disabilities and their families. It provided financial support to state and local governments to educate infants, toddlers, children, and youth with disabilities. It is Public Law 94-142, also called the Education for All Handicapped Children.

Supporters hail the House amendments as long overdue reform, while thousands of parents and advocates who had urged major changes in the bill were left disappointed. The Senate will introduce its own version of IDEA amendments soon, if not already.

If the Senate passes its version, the House and Senate will try to work out differences in a conference committee. Then a final bill may emerge. Fundamental differences between the House and Senate versions may delay or stall the law’s reauthorization for this year. It has happened before. If deliberations fail, the reauthorization process will start again next year.

Some of the provisions that passed in the House bill include:

• School districts could offer parents a three-year "Individualized Education Plan" (IEP), and eliminate short-term objectives for children with special needs, rather than having a new IEP crafted every year as is required under the current IDEA.
• A major change in the "discipline" provisions would remove the process of deciding whether a student’s behavior results from the disability ("manifestation determinations"). It would also remove requirements for schools to develop "functional behavioral assessments" and "behavioral intervention plans" in order to positively address the behavioral needs of students with disabilities.
• Parents of special education students who attend low-performing schools would be allowed to use federal special education money to buy private tutoring.
• Governors could set the hourly rate for lawyers of parents who win cases forcing local schools to pay for additional services.
• Ten states would be given "paperwork reduction" incentives. These incentives would allow them to change documentation requirements without public review.
• "Voluntary binding arbitration" would substitute for traditional IDEA dispute resolution procedures.

Grant studies children with TBI

OLRS believes that school districts are not identifying children with TBI as such; therefore these children are not receiving services specific to their needs.

The TBI Protection and Advocacy Grant will allow OLRS to assess under-representation of children with TBI in Ohio’s schools and to look at the specific service needs of this population.

Priorities of the grant

• Provide protection and advocacy services to children in Ohio with TBI regarding educational issues
• Increase knowledge of parents, educators and other professionals about TBI
• Increase the ability of parents, advocates and others to advocate on behalf of children with TBIs for special education services
• Conduct outreach activities, including creating a self-advocacy document for parents about TBI and special education, providing training to parents and advocates, and offering regional meetings to learn what parents and advocates consider to be the important issues.

Regional meetings provide understanding

Parents shared information about barriers they encountered in getting their children identified as having a TBI. Several parents described frustration with the school district’s not knowing how to evaluate a child with a TBI. Others described teachers who did not "know what to do" with their child. Many parents suggested that schools and teachers needed training to know how to educate children with TBI, and that parents need to know their rights.

Some parents shared good experiences with school districts. One parent said that her school district wanted to work together to meet the needs of the child, but that the process of identification and evaluation was difficult due to a lack of information in Ohio about how to work with students with TBI. Most parents complained about the lack of information and guidance concerning special education services for children with TBI.

In addition to regional meetings, OLRS has helped several children with TBI through the educational process. OLRS also has helped parents get their children identified as having a TBI for purposes of receiving special education services. With appropriate identification, teams are able to focus on specific needs of a child with a TBI. Services identified and provided include:

• Training school personnel about TBI
• Assistive technology for the child with TBI

In several cases, correct identification of the child and providing services to address the TBI led to decreased behaviors of the child that interfered with learning.

Transition services required in special education

• Post-secondary education
• Vocational training
• Integrated employment
• Continuing and adult education services
• Independent living
• Community participation.

The plan must address all areas of transition related to the student’s goals. These areas may include:

• Career specific skills
• Employability skills (finding jobs, completing job applications, job interview skills, on-the-job behavior)
• Community and independent living skills (traveling and mobility, meal planning and purchasing, use of money and banking, personal hygiene).
• Remedial education (for example, additional instruction on writing to complete job applications).

The plan must be based on the student’s individualized needs, aptitudes, interests and preferences, and it must be outcome oriented.

The IEP team decides what transition services will be provided. The student must be invited to attend the IEP team meeting. Students should take an active role at the IEP meeting because the transition plan must be driven by student preferences.

In addition to school personnel, other agencies that may need to provide transition services to the student should be invited to the IEP meeting. For example, a representative of the Ohio Rehabilitation Services Commission (the agency responsible for providing vocational rehabilitation services to eligible people with disabilities). Other agencies may pay for the services, but if they fail to pay, the school district must reconvene the IEP meeting to find other ways to meet the student’s needs.

Today’s students aware of inclusion; learn positive attitudes about people with disabilities

AXIS Director Sue Willis recently chatted with three classes of second graders at Conger Elementary, Delaware, about diversity in the workplace. Many of the students are well aware that items such as handicapped parking spaces, push button automatic doors, curb cuts and ramps help people "do things" in the community. They also know that accessible vans, motorized wheelchairs and scooters, specialized computers, and other forms of technology help people with disabilities get jobs that they want.

DD Council outreach extends to Latino community

Gloria Schanely, organizer of the "Unidos por Venezuela" (United for Venezuela) event that brought together 100 Venezuelans, said the group will meet once a month for prayer and contemporary fellowship and community support.

Held in March at Iglesias de Dios Hispana Carismatica "El Paso," located in Columbus, the meeting brought together a Latino community saddened by political strife in Venezuela.

"I find that people are very receptive to outreach for the most part if you can show them how you are able to assist them," Latham said. "People need to know where to go for help."

Latino family urges others to break down cultural barriers by seeking assistance

Marquez, who came with her family from Venezuela seven years ago, became involved with the Ohio Legal Rights Family Support Project, and works to spread awareness to the Latino community about disability and services.

Marquez’ son, Armando, 10, has a seizure disorder and mild mental retardation.

"He was okay up to age two, but then he couldn’t move, walk or talk," Marquez said, with the assistance of her daughter as an interpreter.

The mental retardation diagnosis was at first difficult to accept. "When the doctor explained to me that he had mental retardation, I was in shock for two months," Marquez explained. "No, this couldn’t happen to me."

That shock was in line with how the Latino culture typically views disability, she said. "In our culture, people are afraid of what the others are going to say about a family that has a child with a disability."

But today, far removed from the shock she initially felt, she strongly says, "I am proud of my son."

Marquez and Perez both speak highly of the accomplishments Armando makes at Northeast School, in Gahanna, where he is in the fourth grade.

Many times, Latinos resort to keeping a child or adult who has a disability in the background, not expecting them to excel. But Marquez and Perez gladly talk about the successes Armando makes through creating goals in his Individualized Education Plan.

"They (at the school) let him eat on his own," they both say with pride. "He traces on paper. That little thing is great. You feel the satisfaction in that."

Marquez said more Latino parents need to take an active role in their children’s education, and to be as informed as possible. Both Marquez and Perez urge other Latinos faced with disabilities to seek out the services available in their communities.

"It’s very important for parents to express their opinion (even through an interpreter if that is needed) so the teachers know what the parents expect," Marquez said.

Perez said Latino families tend to be overprotective of those with disabilities. "But if you just let them try things one time, and see what they can do, you will be surprised. You will lose that fear."

"When you believe in your child with a disability, that he can do things, that he can go to school, that he can do sports," Marquez said, "you become enthusiastic, and it’s contagious to other people to friends, family and neighbors."

And to the child with a disability, "He feels more sure, so he does more," Perez added.

People who come from underdeveloped or poor nations where no specialized disability-related services are offered tend to think the same is true in the United States, Marquez and Perez said. "There are a lot of resources, a lot of help," Marquez said. "We just have to ask. Sometimes, we are in a panic and we just don’t ask."

She credits Dr. Juliann Paolochi, of Children’s Hospital, Columbus, and Armando’s teacher, Jean Lebold, for Armando’s ongoing success.

"The doctor has known him over the long period," she said. "And knows the case. It’s best when you have one or a couple people who stay on and know all about your case."

Perez said that through their experiences with Armando, her young daughters and Armando’s brother Ebenezer have become knowledgeable about and accepting of others with disabilities.

Dreaming big pays off for ALL kids!

As you roll up to the arched entrance of Jackson Township North Park in Massillon, you can’t believe your eyes! There before you are all the things you need to be able to do those activities. And to top it off, all the other kids from your neighborhood, with and without disabilities, are playing there too.

Based on an idea from 12-year old Katie Riolo, and the dedication of her aunt Judi Lyons and five other moms of kids with disabilities, many Jackson kids and their families are enjoying that thrill. After reading an article about a completely accessible playground, Katie wrote her aunt, "Wouldn’t it be cool if one were built in Jackson?" And the project was born.

Forming a Playground Advisory Committee (PAC), the six moms set out to design and raise all of the funds for the project. The committee felt it was important for the community to take ownership of the playground and embrace the inclusive philosophy that the playground would represent.

The goals of the project, as described by Joyce Fox, the PAC chair and current DD Council member, are "to increase access for our citizens with disabilities and to increase the public’s awareness and understanding of the needs of those who have developmental and other disabilities."

Fox explains that she and her committee want their kids to grow up in an environment of acceptance. So their top priority was to create a play environment that encourages social interaction between children with and without disabilities. "It’s not a playground for children with handicaps. It’s a playground for children of all abilities," said Susan Monteleone, the PAC’s treasurer.

With the support of Jackson Township Board of Trustees and the Township’s Parks and Recreation Department, Meyer Design Play Equipment Co., Crossroads RC&D, and many volunteers and donors, the fully accessible and integrated playground took two and a half years to become a reality. North Park Playground opened with ribbon cutting celebration and significant community support a year ago.

Cost became a formidable challenge. Chris Meyer of Meyer Design informed the committee that the project would cost them $170,000, a 70% increase over original estimates. But the PAC’s dream was too powerful to halt their determination.

Each mom had experienced the frustration of their child’s inaccessibility to existing playgrounds, yet they didn’t want a separate "special" playground. They wanted a playground that all kids could use regardless of ability.

That frustration effected all the family members, especially the siblings who wanted so much to take their brothers and sisters along to playgrounds. The vision that emerged, soon embraced by the entire community, resulted in North Park Playground.

The entire playground is enclosed by a fence with only one entrance and exit. "The fence is as much an accessibility feature as the pathways and ramps," says Fox. "For a child like mine with a cognitive disability, a play area isn’t safe if it isn’t enclosed because he doesn’t understand the safety of boundaries."

At the entrance arch, tiles contain quotes about disability awareness and the benefits of diversity. Also displayed at the arch is the theme of the PAC "Within the heart of each community, everyone belongs."

Unique features include:

• Accessible swings, one with arm propulsion;
• Elevated sand tables and water play tables;
• Braille and sign language panels;
• Navigable surfaces such as ramps, asphalt and rubber paths, and special wood fiber surfaces;
• Bridges that give wheelchair users the sensation of sliding;
• Slide transfer station;
• Stainless steel slide to eliminate the static electricity that occurs with fiberglass slides (static interferes with cochlear implants);
• Accessible toddler unit; and
• Fenced ball court with adapted apparatus heights.

In addition, the playground includes "Chris’ Place," a grassed area for free-spirited play and family picnics, named in memory of ten year-old Christopher Brinkman, the son of PAC vice-chair Yvonne Brinkman and husband Rick.

Ohio Public Images and the Ohio Developmental Disabilities Council in March honored the Playground Advisory Committee of Jackson Township, Massillon with the Excellence Award for an Individual or Organization for exceptional efforts at creating accessibility. In May, the committee was honored by a Senate Proclamation for the project from Ohio’s 125th General Assembly.

The good folks of PAC and their Jackson Township neighbors have proven that within their community, everyone belongs!

DD Council’s Empowerment Fund rules!

DD Council created the Empowerment Fund to help make it possible for people with disabilities and their families to serve on relevant committees and boards, and to attend conferences.

Good friends, Clarice Sacharow and Josephine Rosin from Richmond Heights, shared enthusiastically their excitement for being able to be with so many other folks who have disabilities, especially people with disabilities different from their own.

"We’re slow, that’s all. People who call us mentally retarded make us angry! I tell people I’m not retarded, I’m just slower!" declared Clarice. She and Josephine, senior citizens, agree that making new friends with people who have physical disabilities is very helpful to them. She explains that making such contacts helps them to learn more about how to help others.

Working as a housekeeper, Clarice has fulfilled her longtime dream of living in her own home. Elected Chairperson of the 2004 Ohio People First Annual Conference, she was glad to meet so many folks at Solidarity '03 who can now be resources to her.

Donald Gear, Marion, is impressed with how much he learns attending conferences. As vice president of his local People First, Donald expressed his joy at being able to use the Empowerment Fund to get to Columbus this year. "My goal is to help my local group raise money for more people to attend important meetings like this," Donald said. "I couldn’t have gotten here without EF support."

First Capital Enterprise associates Kim Frey, Brian Park, and Walton King traveled from Chillicothe together to attend the conference. The three friends all have jobs in their community and are president, vice president, and secretary, respectively, of their local People First. Each voiced how thrilled they are to have the chance to network with so many new and interesting people. "We had no other way to get here than with Empowerment Fund money," Kim shared.

Employed as a File Clerk for the Services and Support Department of the Medina County Board of MR/DD, Courtney Jordan feels more people should learn about the availability of the Empowerment Fund. "More publicity is needed," said Courtney. "I’d like to get more new People First folks involved with the EF program."

One of the most powerful examples of the benefits of Empowerment Fund dollars came from Cincinnatian Linda Kusick, who proudly presented her business card as Advocate Representative for Resident Homes, Inc. in the Queen City. Linda had previously received EF dollars to attend the Self Advocates Becoming Empowered (SABE) Conference in Buffalo. Arranging the trip and taking a bus there by herself, her goal there was to learn ways to help others. And that’s exactly what she is doing now.

At Solidarity '03, Empowerment Fund resources helped her to get two other people with disabilities attend, and paid her to be their personal assistant! Linda is an example of how EF dollars equip people to not only grow personally themselves, but enable them to become sources of empowerment for others.

"Meeting new people to help me do my job back home is one of the things I’m finding so helpful," explained Linda. She hopes to establish a new People First group in the residential system in which she works.

These and other spontaneous and random stories shared at Solidarity '03 demonstrate just how beneficial DD Council’s Empowerment Fund program is, and suggests an unlimited potential for other opportunities for people with disabilities to empower one another!

For more information, contact: Robin Shipp, DD Council, (800) 766-7426, robin.ship@dmr.state.oh.us

Ohioan’s trip leads to International Festival performance

Mortland, 34, of Columbus, spent most of January in Brisbane, Queensland, Australia, visiting Dr. George Dangel about using subtle energy to stimulate the body’s own healing processes.

Mortland has used a wheelchair since 1997 when he was in a motorcycle racing accident at a Missouri speedway. A 12-string guitarist, he has played the instrument for nearly 24 years.

Mortland decided last September to make the two-day, 34-hour trip to Australia. He belongs to the Artists with Disabilities Network of Ohio (AWDNO), which enables him to network on the Internet with leaders of Access Arts, an Australian organization that promotes artistic endeavors of people with disabilities. Access Arts is in New Farm, a community in Brisbane.

"He arrived with his guitar and ready to perform," said Ludmila Doneman, director of the November 2003 festival. "We will be delighted to have him." At this time, Mortland is the only festival participant from the United States.

Neal Price, Access Arts executive director, was happy to meet Mortland. "We were impressed by his skill, talent and motivation," he said. "Derek’s a great example of a committed and skilled musician who’s generous with this time and spirit. We knew he would tell his friends about the festival and become a festival advocate."

Wataboshi is a Japanese word for dandelion seed. Like seeds, blown by the wind to all corners of the earth, the festival hopes to share the message of peace and harmony. Pianist David Helfgott, known widely through the portrayal of his life in the motion picture, "Shine," serves as the International Ambassador to Wataboshi 2003.

Jim Shannon, executive director of AWDNO, is equally pleased. "Derek is a dedicated artist and advocate. By bringing his music to the festival, he will be sharing with Australia not only his musical talent but the message of the AWDNO and its artists; that all artists of any and all abilities can participate in an inclusive arts environment."

Mortland also met Access Arts member Jeff Usher, a jazz pianist who is blind. "We’re both improvisational musicians, and we sat down and played off each other - making up music on the spot," he said. The two are discussing what they will perform in November when Mortland returns for the festival.

Mortland also took time to do some sight-seeing while in Australia, touring some of the bush country of the Outback, watching wild animals leaping across the roadway and climbing heights to what is known as the Best of All Lookout to oversee the land from a thousand feet up. He also visited the Crocodile Hunter’s Australian Zoo, which features Harriet, Charles Darwin’s giant tortoise. "She’s 170-some years old, and they expect her to live for another 30 years," he said.

Mortland is an advocate at MOBILE, the Center for Independent Living in Columbus, and specializes in Housing and Advocacy issues.

For more information about Access Arts, visit www.accessarts.org

Resources & Announcements

DD Council member receives Tecla Jaskulski Public Policy Award

Elsie D. Helsel, Ph.D., Member Emeritus of the Ohio DD Council will receive the award at the 2003 Summer Public Policy Seminar in Washington, D.C., on June 4, 2003.

Tecla Jaskulski had more than 25 years experience in developmental disabilities services and policies. She was a moving force behind DD Council’s 1990 Report to Congress, providing much of the technical assistance on policy analysis required for that report. Helsel traveled many of the same paths. One of her most significant accomplishments in Ohio was spearheading change in the definition of developmental disabilities so that it paralleled the federal definition.

Congratulations Sue Hetrick, Director of Advocacy for the Ability Center of Greater Toledo, who is the recipient of the National Council on Independent Living, Region V Advocacy Award.

The award, in recognition of her advocacy efforts on the federal, state, and local levels, will be presented at the National Council on Independent Living’s Annual Conference.

Wheelchair Transportation Research Study

Investigators at the University of Pittsburgh are conducting a research study under a grant from the National Institute for Disability and Rehabilitation Research to identify the frequency and nature of injuries to wheelchair riders involved in motor vehicle accidents. People who use wheelchairs or scooters as their primary means of mobility are eligible to participate.

The investigators will survey over 300 wheelchair users. The survey, completed by mail, will include questions on basic information such as age, gender, and design of the wheelchair, as well as questions on the types of transportation used, any involvement in motor vehicle accidents, and any resulting injuries.

The results will lay the foundation for future efforts to improve transportation safety for wheelchair users.

All eligible participants who complete the survey, will receive $20 for their time and effort. If you are a wheelchair user and interested in participating, contact: Ashley Rotko, Center for Injury Research and Control, University of Pittsburgh , (412) 383-7047, e-mail: karst55+@pitt.edu

People with Disabilities

In each issue this magazine gives in-depth coverage to one issue important to people. May 2003, covers a statewide Accessibility Campaign that began in 2002 and is an ongoing effort to get people with disabilities, public officials, business owners, advocates and the general public involved in making accessibility a reality in New Jersey.

Some of the articles include:

• The Access Manifesto: We belong. Let us in.
• Equipping the Troops
• Barriers of Access and Attitude: A City Tour
• Freedom Fighters: Four stories of advocates in action
• Looking for Accessibility: Doctors’ Offices
• If You Make it Accessible, They will Come: Shopping

Past issues have included: aging and disability, personal assistance, life and death issues, violence against people with disabilities, technology, employment and travel.

Free to people with disabilities. 55-60pp. To subscribe or request back issues contact: Norman Reim, NJDDC, PO Box 700, Trenton NJ 08625-0700; (609) 292-3745v; (609) 777-3238 tty. Available on the Internet at: www.njddc.org

The Costs of Triple Jeopardy: Aging, Developmental Disabilities, and Ohio’s Impending Care Shift

Triple Jeopardy is a reality in Ohio. Ohio has thousands of individuals with developmental disabilities living in precarious arrangements with aging caregivers. And Ohio has a long-term care system, in both the aging network and MRDD system, already unable to meet existing need - and facing imminent and significant increase.

This report covers

• Scope of the problem
• Absorbing the Care Shift: The Formal System
• Care Shift - Cost Shift: The Human Face
• Family Profiles
• Recommendations for Further Research and Data Collection
• Conclusion

Includes references, tables of numbers served by age and setting, prevalence estimates, and estimated unserved.

For more information or to obtain a copy, contact: Fatica Ayers, DD Council, (800) 766-7426, (614) 466-5205 v, (614) 644-5530 tty, fatica.ayers@dmr.state.oh.us

The Collector of Bedford Street VHS, 34 minutes

The Collector of Bedford Street is a good opportunity to discuss the challenges families and individuals face regarding support systems and planning for the future. Tips for facilitating a group discussion are available on the Internet: www.thecollectorofbedfordstreet.org

$50 for individuals; $100 for small non-profits, public libraries, service agencies for general use and small public screenings; $200 for university, other teaching institutions, and for-profits. Cost includes S&H, taxes, and a donation to Larry Selman’s trust. Prices do not allow duplication.

Contact: Alice Elliott, 107 Bedford St., Upper One, New York, NY 10014; (212) 924-7151; (212) 206-8326 fax

Guardianship in Ohio

This booklet offers a brief but comprehensive, non-legalistic overview of guardianship in Ohio, especially for families who have a child with mental retardation.

Much of the information also is relevant to someone with mental illness, or someone who has lost competence as the result of an injury or the effects of aging. Presents alternatives to guardianship.

Zwyer is Executive Director of the Ohio Developmental Disabilities Council and has spoken to parents about guardianship and estate planning issues for more than 20 years.

Free. 24 pp. Contact: ODDC, 8 E. Long St., Suite 1200, Columbus, OH 43215, (800) 766-7426, (614) 466-5205, (614) 644-5530 tty. Also available on Council’s web site: www.state.oh.us/ddc

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

Apply today!

New project: "Funding for the Arts"

For profit and non-profit organizations, and individuals in Ohio that are committed to promoting artists with disabilities, are encouraged to apply. Artistic disciplines can include, but are not limited to:

• Dance
• Writing
• Design
• Fine art
• Choreography
• Poetry
• Architecture
• Painting
• Music
• Fiction
• Interiors
• Sculpture
• Band
• Playwriting
• Graphics
• Mixed media
• Photography
• Video
• Web design
• Jewelry

To request an application, contact: DD Council, (800) 766-7426, (614) 466-5205, (614) 644-5530 tty or visit: www.state.oh.us/ddc

Deadline for receipt of applications is July 15, 2003.

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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