DD Quarterly Winter 2002

DD Quarterly is produced by AXIS Center for Public Awareness.

People First of Ohio emphasizes teamwork, freedom, responsibility and choice

"I was very humbled, very proud. It was the Olympic spirit, and part of America," she said. "I was so happy." Peterson ran two-tenths of a mile with the glowing flame raised high. She was one of thousands nationwide who were nominated for the honor of moving the flame toward its Salt Lake City destination for the winter Olympic games.

Peterson said co-workers cheered her on, and banded together to purchase the $300 torch. She plans to display it in a shadowbox, along with the shirt she wore during the run.

Rights, responsibilities, choices and dreams take center stage throughout the state each month for people with disabilities as part of People First of Ohio meetings.

People First, a statewide self-advocacy organization run by and for people with disabilities, was formally established in 1998.

Today, People First, with nearly 1,000 members in 28 chapters in the state, continues to grow. Its newest groups are set to begin January meetings in Summit, Jackson, and Ottawa counties.

Last year, People First hoped to open four new chapters. "Instead, nine were started," said Mary Smithson, People First staff person of the DD Council. Council and the Ohio Department of Mental Retardation and Developmental Disabilities are providing funding to this advocacy organization. Smithson attributes the strong growth to the enthusiasm members share for the organization, which encourages them to speak on their own behalf in their communities and families. People with all types of disabilities are welcome to join.

For a lot of people, being in People First is the first chance they've ever had to feel comfortable speaking up for themselves. It also may be their first experience serving on a committee, or giving a report and using parliamentary procedure.

People First members meet to discuss issues and concerns important to them, such as living in the community. They have presented programs about the history of the disability rights movement and how it relates to other rights-oriented movements to other organizations. And they plan and enjoy social gatherings.

At a training session, held December 8 at the Montgomery Developmental Center, Dayton, People First Executive Director Sadie Hunter led about 30 members though a day-long talk and role-play about rights, personal preferences, and more.

Hunter, who has been advocating for people with disabilities since the 1970s, coordinated the event, but self-advocate John G. Gillespie, of Mount Vernon and People First of Knox County, led much of the meeting. He prompted audience members to discuss important topics like respect and responsibility. Gillespie said, "Together, everyone achieves more. We have to learn together."

Gillespie likes People First because the group enables him to help others to feel better, he said. He often assists Hunter with presentations about the organization as counties consider starting chapters.

At the Dayton meeting, Gillespie asked others to spread the word about People First, which will have a statewide conference in Dayton in March. (See below.)

"You are an advocate when you take responsibility for your life in some way," Gillespie said. "You are a citizen."

Claude Martin of Trotwood said he enjoys People First. "You get to talk about if you want to move somewhere else and you get to talk about your life," he said. "You get to be an advocate."

Martin said People First is important because members can "speak for themselves, and be a voice for others."

Highlighting Gillespie's call for personal action, Martin said he recently attended a Trotwood City Council meeting and got the name of a contractor who is going to fix the street Martin lives on.

Chapter advisers offer support to members. Hunter told the group, "When you're an adult, and you have a life, others need to respect your life. No one has the right to yell at you."

Jeanie Oram of Vandalia said People First has helped her to meet new people and learn about independence. "Before I started coming to People First meetings, I only knew the word "independence," but I didn't know what it meant to have independence. Now I know."

The energized, and positive meeting featured discussion about a wide variety of issues, including what the best way might be to talk with a parent about an important issue, and what people's rights are as renters. "Nobody makes any mistakes or says anything wrong at a People First meeting," said Hunter.

Some attendees talked about new and healthy foods they recently ate, and told the others what the foods were like. Such discussion is useful because many times people with disabilities are exposed to limited types of foods and it is interesting to learn from others.

Hunter illustrated the importance of individual rights by acting out everyday situations.

"Members need to learn they have rights in a variety of ways," she said. "By acting it out, they can see it, and it really challenges a person with a disability to take a more active role in his or her life."

The meeting closed with a session called the "Freedom Door," an exercise that illustrates that each person's life experiences help shape his or her own "keys" of awareness. By learning more, the door to freedom is more likely to open.

Tim Smith, a qualified mental retardation professional at the Montgomery Developmental Center, said he recognizes the value the center has gained with its own People First chapter. "I've seen more of an awareness of choices that are available to people with challenges," he said. "I think it's a very good partnership idea and networking resource for building self-determination."

For more information about People First of Ohio, to join a group, or form a chapter in your community, contact: Sadie Hunter, (740) 397-6100, (888) 959-8838 toll free, (740) 397-6118 fax, or visit www.peoplefirstofohio.org.

Photo captions include: At the People First meeting in December, Claude Martin of Trotwood learned that self-advocacy experiences add up to unlock doors in life. Here he opens the "Freedom Door."

Friends Kenny Campbell, Kettering, and Jeanie Oram, Vandalia, talk about independence.

Jane Church, Springfield, watches as Teresa Watkins, Huber Heights, uses her communication book to show where she likes to go when she wants to be alone.

You Are a Star Just Who You Are

Upcoming People First Conference puts focus on you

March 22-24, 2002 Dayton Marriott Hotel

For more information about the conference, or to request registration materials, call People First of Ohio toll-free: 1 (888) 959-8838.

Ohio Developmental Disabilities council, Improving the lives of Ohioans with disabilities

8 East Long St., Ste. 1200, Columbus, OH 43215-2931 Toll free (800) 766-7426 Voice (614) 466-5205 TTY (614) 644-5530 Fax (614) 466-0298 www.ohio.gov/ddc

Director, David A. Zwyer; Officers, Chairman -Jerry Plassenthal, Vice Chair -Peg Gutsell, Secretary -Carolyn Knight; Staff -Fatica Ayers, Program, Inez Choice, Support, Alea Jones, Fiscal, Ken Latham, Program, Leslie Paull, Program, Stephanie Reid, Adm. Asst., Robin Shipp, Support, Richard Skelley, Program, Mary Smithson, Program, Kay Treanor, Program

Family support advocacy continues

Legislative efforts needed to change the system

The importance of this issue is best exemplified by several initia-tives that the Council is actively supporting. Both the Family Support Collaborative project and the federal Double Jeopardy grant are directed toward the needs of families who are caring for children and adults at home. These grants focus on systems change, including changes in policies and laws.

DD Council also supports the federal "Family Opportunity Act of 2001," a legislative attempt to offer Medicaid coverage to children with severe disabilities living in middle income families through a buy-in program.

Kay Treanor, Children's Issues policy analyst for DD Council, and a parent of a child with a disability, said the focus on family support is an attempt to provide much needed help to Ohioans who are at their wits end trying to find answers and support as they care for their children.

"I know all too well what a struggle it can be for a family to provide their child's basic and essential needs. Families who commit to taking care of their children with disabilities do so with very little support," she said. Often families lack support on several fronts, Treanor added, including financial, emotional, and physical.

The efforts to change public policy are based on real-life needs, said David Zwyer, executive director of DD Council. "The divorce rate among families who have a child with a disability is 80 percent. Something needs to be done to support families before they go into crisis so that they don't go into crisis in the first place," he said.

Colette Adams, of North Olmsted, is one parent who knows the meaning of crisis. Mother to an 18-year-old with a disability, she recognized early that supports fizzle away when a child with a disability is born. "I have a large family and I thought I would have lots of support, and that everyone would be there for me," Adams said. Instead, family members drifted away, unwilling to help. "When we would get together, we'd talk about everything but Jamie's situation," she said. Even her church was absent for her. She attributed the lack of support to the idea that people prefer to help with short-term dilemmas that have clear-cut answers. "Nobody wants to commit forever," she said.

Her scenario is all too familiar and fits the statistical profile for a parent with a child with a disability in one other way: "My marriage fell apart," she said. That's why Adams, a former chair of the Council's Children's Issues committee, supports policy and law changes that will increase the opportunities to make families true decision-makers. "We need to listen to each individual family and find out what they need," she said. "Each family needs something different."

Adams met with frustration in the form of stringent regulations a few years back when the rules would not permit sending her son to a summer day camp. The camp would have been a solid environment for him and a perfect scheduling fit. Rather than pay for the camp, she was required to use a babysitting program that actually cost more than the camp. "That didn't make sense," she said.

Many times, parents must quit their full-time jobs and take low-paying, part-time work with no insurance or other benefits so they can care for their children with disabilities. Or, parents run into the situation of not being able to work because they can't find, nor afford suitable caregivers. "It's like all the cards are stacked against you," Adams said.

Some families find that they have the emotional support from family and friends, but they lack the knowledge and tools that they need to help them find appropriate services. Kim McConnell, an advocate for the Family Support Collaborative and the mother of a five-year-old son with severe brain damage, found this to be true in her family's situation.

"We were fortunate that our family and friends, even strangers, came to our emotional and financial rescue. After a few months, though, I began to find out about services that I did not know existed. Even now, five years later, I am still finding out new things about the system," McConnell said.

She gives an example of how she found out about financial assistance through the Social Security Administration. About six months after her son's accident, she learned from an early intervention specialist about an SSI program. She applied on behalf on her son, who qualified. Unfortunately, SSI is not retroactive, so their family missed out on six months worth of financial benefit, a significant loss since McConnell had to give up her full-time job after her son's accident. She comments, "I have found that the most valuable sources of information are other parents. For the most part, they are walking books of knowledge when it comes to finding services."

Denise Kissel, of Akron, finds her passion for family support issues in trying to prevent any more families from collapsing due to a search for support that falls short. "It shouldn't be either - or. It should be all inclusive," Kissel said about the assumptions the state makes about what families need. "The people who know best about what they need are the families." Kissel is the divorced mother of a teenage son with a disability, and she's waded through the waiting lists, waivers, and any other stiff rule or regulation that helps to complicate, confuse, and delay services. "While we are on waiting lists for services, our families are falling apart," she said.

According to Zwyer, the current system all too often forces parents to take desperate measures. "The great indictment of our service delivery system occurs when a parent, normally a single mother, is forced to abandon her child (i.e., leave her child at a county board of MR/DD or Children Services) and leave the state in order to force the system to respond. I have known this to occur," he said.

The Family Support Collaborative, an advocacy group funded through a grant from the DD Council, and administered by the Ohio Legal Rights Service (OLRS), will be proposing legislation to change Ohio's system of services and supports.

The proposal would establish a statewide Family Support Board within the DD Council. The Board would consist entirely of family members of children with developmental disabilities.

The Board would develop a family-centered, family-directed system and coordinate efforts with local and state agencies. It also would make recommendations to the governor and General Assembly about topics that relate to particular family needs involving children with disabilities.

Initiatives may be test piloted by the Board, which will also review other issues that pertain to developing a family support system.

As efforts continue to change the system, the FSC and OLRS are seeking input from families. Through the Family Support Survey, the project is attempting to gather parental and public support, and to document additional data on what ongoing supports Ohioans need.

"Families and individuals with disabilities have been, and will continue to be the driving force behind change in the service delivery systems in Ohio. OLRS, as an advocacy organization and grantee, is delighted to have the opportunity to work with Ohio's families to enhance their role as decision makers through the proposed legislation," said Carolyn S. Knight, director of the OLRS.

Families may complete The Family Support Survey by visiting the OLRS web site: www.state.oh.us/olrs/fsc

For a print copy of the survey, or for more information, contact: Tom Hemmert, OLRS, 8 E. Long St., Suite 500, Columbus, OH 43215-0299, (800) 282-9181, themmert@olrs.state.oh.us.

Family Support

Legislative Breakfast

Reservations are required.

For more information, contact: Ken Latham, DD Council (800) 766-7426 toll free (614) 466-0298 fax kenneth.latham@dmr.state.oh.us

Keep the momentum going!

Support a Medicaid Buy-In program in Ohio.

"Orange barrel" magnets and buttons are available from: Ohio Legal Rights Service (800) 282-9181 toll free (614) 644-1888 fax webmaster@olrs.state.oh.us

Black and gold lapel pins are available from: Disability Policy Coalition (800) 429-8885 toll free (614) 267-4550 fax cpo@iwaynet.net

For more information about Ohio's Medicaid Buy-In Campaign, contact: Doug DeVoe, MBI Project Director 5022 Sinclair Rd., Columbus, OH 43229 (800) 589-2603 v/tty oamhddevoe@aol.com

DD Council welcomes new appointees

John R. Hunt, Perrysburg

John Hunt has 13 years of experience supporting and advocating for individuals and their families in Lucas and Wood Counties.

In commercial account sales for Brooks Insurance Agency, he became connected with developmental disability issues with the birth of his daughter, Maggie, now 14, who has Down syndrome. Hunt believes in working for system change that respects individual choices. He believes that public awareness and education of society are the real means to accomplishing appropriate system change and that a coordinated effort with all similar organizations working together has the greatest impact.

He will serve on Children's Issues and Supported Living Committees, and the Public Awareness subcommittee.

He has a bachelor of science in business administration from The Ohio State University. He's served two terms on the ARC of Lucas County Board, with his last four years on the Josina Lott Residential and Community Services Board. He is past president of both groups. He is on the Special Olympics of Wood County Advisory Committee.

Meg A. Kane, Cincinnati

Kane is the Vice Co-Chair parent representative of the National Coalition on Self-Determination, which is a partnership of people with disabilities, parents, and family members who work to promote federal policies that support self-determination. Underlying the efforts of the national coalition is the belief that community living is a right of all people, regardless of the severity of their disabilities.

Kane believes her most important role on Council will be to encourage collaboration and to share information and knowledge with other Council members. She wants to work with others to advocate for system change that ultimately will lead to people with disabilities gaining true control over their lives and to becoming fully integrated in the fabric of daily living.

She will serve on Employment, Public Policy, and Community Living Committees.

Shirley B. McFee, Bowling Green

A parent of a child with a disability, McFee is an active participant in the Toledo Consumer Advisory Board of the Ohio Rehabilitation Services Commission. She recently authored "A Guide for Local CAC Members. She has numerous other disability-related memberships and activities. She feels her most important role on Council will be to advocate for older parents so they might have appropriate plans and supports in place for their adult son or daughter.

She will serve on DD Council's Community Living and Public Policy Committees.

Michael R. Scholl, Worthington

His legal background gives him a grasp of the state and federal legislative processes, which he believes will be helpful in his Council work.

He says the projects on Council most relevant to him are those dealing with children's issues, health, housing and employment. He describes himself as a busy sports father because all four of his daughters are active in sports. His current hobbies are bonsai, collecting Sherlock Holmes books and items, being a Cleveland Browns fan, and occasionally playing golf.

Scholl has a B.A. in English from Miami University and a juris doctorate from Capital University.

He will serve on Council's Community Living, Health and/or Children's Issues Committees.

Richard A. Steinbrunner, Whitehall

Born in Dayton, he earned a masters degree in clinical psychology and a B.A. in psychology from the University of Dayton. In retirement, he enjoys using his computer to stay updated in subject areas of mental health, psychology and disability.

He is the father of two and the grandfather of five. His late wife also had a disability.

Because he has worked 45 years for various service provider agencies and now receives services from some of them, he believes one of the strengths he brings to Council is his dual perspective.

Steinbrunner will serve on Council's Health, Public Policy and Community Living Committees.

Governor Taft also appointed Ann E. Christopher of Columbus, Elsie D. Helsel of Athens, Coletta Adams of North Olmstead, and Joyce Fox of North Canton to serve three-year terms on the Ohio Developmental Disabilities Council. These members will be presented in the next issue of DD Quarterly.

DD Council staff reflect strong experience to help improve lives

Mary Smithson started working at Council in 1982 and brought a rich background that has enabled many Council accomplishments.

Currently, Smithson is the staff person assigned to the Leadership Development Committee and the Nominating Committee. The Nominating Committee presented a special challenge this year because under the DD Act, every Council had to increase to 60% from 50% the number of Council members who are themselves people with developmental disabilities or are parents or guardians of people with developmental disabilities.

"I was really glad to see this change in the law so that people with developmental disabilities can have more of a voice on the Council," she said.

One of the goals of the Leadership Development is to orient new Council members and set them up with mentors. This committee also oversees funding for the People First of Ohio project.

Another significant accomplishment in her years with Council is development and oversight of approximately ten grants that really established the early intervention system in Ohio in the 1980s. Some of the concepts and language developed under those grants were adopted in national legislation on early intervention and gave Ohio prominence in early intervention.

In 1988 she became Council's Planning Coordinator and oversaw development of the state plan for developmental disabilities. She's performed that role for several state plans. She was a significant leader in the 1990 report mandated by Congress from every DD Council in the country. The report represented a significant step in setting the tone for the future.

Smithson has a bachelor's degree from Transylvania University in Lexington, KY, and a masters in social work from the University of Kentucky. She started her career in social work by working in a public assistance office in Winchester, KY, visiting families in rural Appalachia. Later she worked for the State of Kentucky handling grants under the Older Americans Act.

When she moved to Ohio she applied her skills at a low income health center and a shelter for battered women before she became Director of Region 5's DD Information Network at The Ohio State University's Nisonger Center and coordinator of an interagency collaboration grant.

Fatica Diana Ayers is Human Resources Program Consultant and works with community living issues. The Community Living Committee covers a broad range of topics that currently includes projects related to:

• Offenders with developmental disabilities,
• Volunteer credentialing of direct support staff,
• Report cards so family members and consumers can make better choices of providers,
• Informal and formal care for parents or guardians who are aging and have caregiving responsibilities, and
• Innovative ways of dealing with personal care attendant shortages.

Ayers has been on the staff since 1988. Originally from Columbus, she has a B.A. in communications and a master of science in general administration from The Ohio State University.

Before working at Council, she was with the Ohio Department of MR/DD implementing the program called Family Resource Services. This program provided funds to county boards of MR/DD to help pay for respite care, modifications to homes, adaptive equipment, counseling/training/education for families, and more.

Ayers had a brother with cerebral palsy and was involved with disability issues from early on. She herself now has a severe chronic condition: fibromyalgia. "When I came to work at Council I didn't have this condition," she said. "Now, because of what Council has done to accommodate me and what I see of others related to disability and accommodation, I've written a handbook for people with chronic disease; I expect it to be published soon."

Ayers also reflects on the 1995-2000 project called "Removing the Mask." "Removing the Mask was basically a self-determination project," she said. Council guided it along, and the outcomes were so significant that now the work the project did is part of the function of the Ohio Department of MR/DD. "This is how it's supposed to work," she said. "Council nurtures ideas through its grants. If grant ideas and solutions show results, the work is then carried on by others, and the grant ceases to exist. In other words, Council seeds the fields.

Ayers' passion is music and expressive dance, which she shares at her church. And she loves her 4-year-old nephew, Jeremiah, too.

Save the date!

SOLIDARITY 2003

Plan now to attend Ohio's largest statewide conference for and about people with disabilities.

AXIS is pleased to announce that it has been selected to serve as conference manager for the next exciting conference. If you have suggestions about things you would like to see or do at the conference, or would like to work on the planning committee, please contact:

Tom Fogarty, Solidarity Chair 118 W. Sunrise Ave. Trotwood, OH 45426 (800) 863-0344 dnosoffice@aol.com

There's no place like (an accessible) home

Marc and Paul Marcum moved into their new home late last summer, and recently celebrated their first Christmas there. The pair, who both use wheelchairs and ventilators due to Duchene's muscular dystrophy, became Habitat for Humanity homeowners after months of planning and construction by area volunteers. They previously lived with their parents.

Paul Marcum is a very happy homeowner. During construction, he regularly monitored the progress. "It was almost an everyday thing to see what was new and what was put in," he said.

But before the first nail could be hammered, land for the dwelling had to be found. Originally, plans to construct the home behind their parent's home did not work out. Paul then called Martin Marietta Aggregates, a quarry company, and asked about nearby, company-owned land located down the road. Shortly after, the company donated one and a half acres of land to the men, a value of $20,000.

Nearly 90 percent of the costs for construction materials were assumed by Lions International and the Delaware Lions Club, with Habitat for Humanity picking up the remaining costs. The Delaware County Board of Developmental Disabilities (DCBDD) helped pay for special equipment such as lifts and larger windows. The kitchen features stylish, black and white tile, while the walls throughout are a neutral beige coordinated with blue curtains and blue carpeting.

With home ownership comes responsibility. "Now, it's getting the bills paid," laughed Paul, 37, a data entry clerk with DCBDD. "It just seems they never quit. You pay this month's bills and you get new ones the next day."

He also said owning a home means more freedom. "I can do more of what I want. If I want to buy some new decorations, I'm not worrying if someone will disapprove. It also gives me more opportunity to grow as a person. Everybody needs the opportunity to grow and improve," he added.

Marc, 33, will soon begin data entry work with "Bridges for Independence." He said his new home provides more space for more family bonding. "I have a young son. Now he's coming to Daddy's house. He's so excited to come here."

Kathy Fitzcharles, vice president of Delaware County Habitat for Humanity, said the organization was happy to help the two. "A lot of times, those with disabilities are forgotten," she said. Pride in ownership and a sense of worth come from home ownership, and the building project was Habitat's way of blending the two and creating an environment the brothers enjoy.

"They own it, they worked for it," Fitzcharles said. "It's not a hand out, it's a hand up."

Earlier in the building process, Hope Taft, wife of Governor Bob Taft, visited the site and helped to plant flowers. Creative Housing of Delaware County also played an integral role in making the home a reality. "It was the first time Habitat for Humanity had been approached to construct a home with so many accessibility features, such as a roll-in shower, motorized lift, ramps, and wider doorways, said Creative Housing Executive Director Mike Corbett. "Habitat wanted to make this work. If there were any roadblocks, they helped to tear them down," he said.

While Habitat asks for its homeowners to provide 250 hours of "sweat equity" (working on the home themselves) Marc Marcum could not do that amount of physical labor. Habitat agreed to allow Corbett to donate the many hours he worked on the house toward that obligation. Paul Marcum's efforts came in the form of phone calls to various entities seeking funding, etc.

Another dilemma that was faced early on and solved was a lack of an accessible Habitat floor plan. Area architect Bruce Gardner created an accessible design that includes two bedrooms large enough to allow the men to maneuver their wheelchairs, with room to spare. The new design means that Habitat now has an accessible floor plan for future homes.

As a result of building the Marcums' home, Habitat of Delaware pledged that every fourth house now built will be accessible to people with disabilities.

Students from an area school also worked on the house, and donations from local companies included a back-up generator, and a state-of-the-art sound system with wiring, and security capabilities.

Corbett said moving the Marcums in was special. "Then we all sort of backed off, because we needed for them to enjoy their new home."

The men live close to their mother's home, and she is still their primary caregiver. Corbett said they hope to find someone who could donate a golf cart to help the Marcums' mother more easily and safely navigate the narrow, busy roadway to her sons' house.

For more information about Delaware Creative Housing, contact: Mike Corbett, (740) 368-5800, ext. 125, (740) 368-5809 fax, or mcorbett@dcbdd.org.

For more information about Habitat for Humanity, contact: Delaware County Habitat for Humanity, PO Box 1110, Delaware, OH 43015-1110, (740) 363-9950.

Photo captions included: At a press conference highlighting construction of the accessible home, Ohio's First Lady Hope Taft presented a housewarming gift to Paul and Marc Marcum; Paul Marcum enjoys watching TV in his own home, which he decorated like he wanted to; Marc Marcum, Delaware County, easily maneuvers through the accessible home built by Habitat for Humanity for him and his brother.

Judy Heumann speaks at OSU, urges ADA vigilance by all universities

She centered her presentation on the history of the disability movement through the eyes of her own personal journey.

The former Clinton Administration Assistant Secretary of Education at the U.S. Office of Special Education and Rehabilitative Services, said society needs to recognize the issues important to people with disabilities.

"The general society has not yet grasped the full breadth and complexity of the problems that disabled people are facing," Heumann said. "I think it's really incumbent upon institutions of higher education to be creating opportunities where people can come together to discuss issues to enable the society to get a better understanding of the issues."

Heumann noted that 54 million Americans are identified as having various forms of disability.

"Seventy percent of those individuals are unemployed," she said. We need to be supporting individuals who are not earning sufficient amounts of money to be able to support themselves."

The sheer ability to work in itself in the U. S. provides individuals with status. "The inability to work puts you in a lower status in the community," she said.

Poor education and discrimination prevent people with disabilities from rising to greater levels of status, she said. "The bottom line is the very significant problem in not being able to enter society's doors through the same doors as everyone else," she said.

Heumann's life was marked with denials to proper education. First, a denial of an elementary education until she was nine and a half years old. Then, she was placed in a class for students with disabilities that included students aged nine through 21.

Through her own tenacity and the importance her parents placed on education, she read at a high school level while in the fourth grade.

Eventually going on to college and graduating, yet denied the right to work in a teaching position, she sued the state of New York for that position and won. She went on to co-found the World Institute on Disability and work with the White House on legislation that furthered education opportunities for children with disabilities, helped created more than 200 independent living centers in the U.S., and helped to draft the ADA.

Heumann said role models are very important for people with disabilities, but also for society as a whole. "I don't look at disability as a negative," she said. "I look at disability as something that is a normal part of life.

"If we don't meet people who are able to discuss their disability as an integral and meaningful part of their lives, we not only deny opportunities for other disabled people to meet role models, but we deny the society in general the ability to really see the diversity of capabilities that disabled people have," she said.

She said a good start continues to be the university system. "It is critically important to make sure that all universities are following the ADA to the letter of the law," she said. "We have to go beyond the removal of physical barriers. We have to go beyond disabilities studies programs." Heumann said universities need to actively recruit students and professors with disabilities for full and continued diversity, growth and advancement.

Photo caption included: Following her morning presentation at The Ohio State University, December 9, disability rights advocate Judy Heumann spoke informally with board members and guests at an ADA-OHIO meeting. At right is Scott Lissner, OSU's ADA Coordinator.

Heumann's speech is available from the OSU ADA Coordinator's office in various formats.

For more information, contact: Scott Lissner, OSU ADA Coordinator, 1849 Cannon Dr., Drake- Room 2054, Columbus, OH 43210, (614) 292-6207 v, (614) 688-8605 tty, ada-osu@osu.edu

Heumann on radio... Judy Heumann will co-host the nationally syndicated radio program, "On A Roll," beginning this month. The talk program airs on 39 stations and the Internet with host and founder, Greg Smith.

Heumann will take to the airwaves once monthly to discuss cutting edge issues about life from the perspective of a person with a disability. Her air dates are February 3, March 24, April 7, May 12 and June 16.

Tune in on the Internet at: http://www.onarollradio.com and follow the links to listen. The site also provides information about radio stations across the country and in Ohio that carry the program.

New dental service brings care to people with disabilities in SE Ohio

The Regional Oral Health Care for Unserved, Underserved and Developmentally Disabled grant began providing dental services in mid-December at the Center for Dental Wellness in Portsmouth. The center serves individuals in Scioto, Lawrence, Pike, Jackson and Adams counties.

"Our phone is ringing off the hook," said Carrie Massie, program coordinator. In the program's first week, 16 patients were treated for a variety of dental needs, from surgical extraction, ultrasonic scanning and root canals, to complete evaluations.

The dental service is offered two days a week to people with disabilities, and other low-income individuals, who many times ignore oral health due to cost issues. Dr. Sherry Senters serves patients on a sliding fee scale according to income. Senters, a National Health Services Corps dentist, has cared for low-income patients for eight years.

Massie said the services are greatly needed in the Appalachian area, where there is one dentist for every 21,000 people with low incomes.

"The low-income people are virtually unserved," Massie said. Prior to the new service, patients had to travel to Columbus for care, which for many meant a 200-mile round-trip. Also, few dentists are trained specifically to deliver oral care services to people with disabilities.

"People with disabilities are often told to not worry about dental health," Massie said. "That leads to gum disease, abscesses, and other problems."

The center will set up treatment plans that include comprehensive evaluations, cleanings every six months, extractions, restorations, and fillings. "The treatment plan is the key, and to get the clients to follow up on that plan," Massie said.

Operatories (rooms with dental chairs) accommodate wheelchairs, but patients also may transfer to typical dental chairs. Project is continuing to develop protocols to handle the many needs particular to various disabilities. One patient, a 40-year-old with Down syndrome, was able to see a dentist for the first time and had a tooth extracted, Massie said.

For more information, contact: Carrie Massie, Center for Dental Wellness, 1112 Gallia St., Portsmouth, OH 46662, (740) 351-0080 v, (740) 351-0890 fax, cmmassie@zoomnet.net

For overall good health, a person needs good oral health. The Center for Dental Wellness in Portsmouth offers these tips:

• Regularly brush and floss teeth
• Have routine dental cleanings to prevent and control most periodontal diseases
• Primary prevention includes fluoride treatments
• Proper diet maintains good oral health
• Water fluoridation protects teeth
• Oral Screenings provide early detection of cancer
• Use mouth guards to prevent injuries during sports activities
• Sealants protect teeth

For more information, contact the Center for Dental Wellness.

It is the policy of the Ohio Developmental Disabilities Council and the AXIS Center to use person-first language in stories written by staff. Articles reprinted or quoted exactly as they originally appeared or were presented from sources other than staff may not reflect this policy.

For a free copy of the guide, "Person-First Language," contact AXIS at one of the numbers listed at the end.

BIAOH Community Support Network helps fill gaps with service coordination

Suzanne Minnich, BIAOH executive director, said efforts are ongoing to place field staff in 15 geographic areas covering all of Ohio's counties.

Currently, seven offices are now open, offering resources to people in all quadrants of the state. Yet, about 50 of the state's 88 counties are still not served by an office, leaving many in rural areas without assistance to key resources that could improve their lives. The offices are in Toledo, Columbus, Cleveland, Cincinnati, Akron, Marietta and Dover.

People with brain injuries need the outreach because a field officer who is nearby can more effectively coordinate services for individuals rather than trying to do so from afar.

"Local contacts help limit confusion and stress for the person with a brain injury," Minnich said.

Chris Curtiss heads the Region 8 CSN office that opened last year in Dover. This region serves people in Carroll, Harrison, Holmes, Tuscawaras and Wayne counties.

She said the office brings consistency to people's lives. "People with brain injuries need structure, routine," Curtiss said. "Chaos is the worst thing."

The entire CSN project is part of a comprehensive model service coordination effort known as "The Ohio Plan." The plan is a beginning in assisting people with brain injuries and their families to access services they are eligible to receive. Minnich believes that this system is the most efficient use of existing resources and operates on the philosophy that services should be individualized, and consumer-and family-driven.

The population of those with brain injuries nears that of those with MR/DD. In Ohio, there are approximately 196,000 people who are living with long-term disabilities due to brain injuries. Nationwide, 5.3 million Americans have brain injuries and 7.3 million have mental retardation.

The leading causes for brain injuries include motor vehicle accidents and falls, with males twice as likely to sustain an injury and older adults more susceptible to falls.

Minnich said people with brain injuries will always need various services to help in their daily lives. Regional offices are needed in rural areas to reach those who are the most secluded.

"When you live in a rural area, your nearest rehab could be 100-150 miles away, and there's no mass transportation," said Curtiss.

"People with brain injuries in rural areas are really isolated."

Support groups are also a major resource offered by CSN. They help people exchange ideas, learn about new services, and meet others who are in similar situations.

Minnich said that people contact the BIAOH after finding they don't qualify financially for services from other agencies, yet still need guidance as they live their lives with brain injuries.

The CSN support groups that Curtiss facilitates help build the advocacy efforts of a DD Council grant, directed by BIAOH. Called "Advocating for Public Policy Change (APPC)," the grant is building a statewide network of advocates that are kept informed of Council issues. This project operates in Stark, Jefferson, Carroll, Columbiana, Harrison, Mahoning and Tuscawaras counties.

Minnich said a funding crunch poses a challenge to CSN expansion, but new support possibilities are on the horizon. "We are working very hard to identify replacement funding," Minnich said. One possible source might be a demonstration grant that could help the CSN for an additional year."

For more information, contact: Suzanne Minnich, BIAOH, 1335 Dublin Rd., Suite 217 D, Columbus, OH 43215-1000, (866) 644-6242 v, (614) 481-7103 fax, help@biaoh.org, www.biaoh.org

How to help children with cognitive disabilities cope with disaster

Here are suggestions to help intervene with children who have cognitive disabilities, such as mental retardation, autism, or other disabilities affecting learning, communication, and understanding.

What to expect

• Children aged 2-5 - Sleep disturbance; difficulty separating from parents; fussiness; confusion; fears about safety; stomach aches; startled by loud noises; or re-enactment of events through play.
• Children aged 5-11 - Worries about safety of loved ones; attention to adult reactions; withdrawal or hyperactivity; repetitious play; impaired concentration and academic performance; or sleep disturbances and nightmares.
• Adolescents aged 12-18 - Sadness; outrage; risk-taking behaviors; substance use or abuse; sleep or eating disturbances; anger or rage; talk of retaliation; increased sense of alienation; shifts in peer groups; or focus on death.

Adolescent thinking style tends to be all-or-nothing, and teens are especially vulnerable to peer influences and failing to consider consequences of their actions.

General strategies to promote coping

• Maintain routines. Children with cognitive disabilities, like other children, adapt best in their own environments and routines. There is comfort in the familiar, so allow children to go about their routines of school, recreation, and play. Consider the community supports you would turn to in time of need: extended family, religious faith, community organizations; and recreational activities that provide outlets for tension and opportunities to spend time together.
• Educate yourself so you can provide support. Learn what children know, and correct misunderstandings by providing accurate information. Help older children understand that recovery is a process that takes time and that there is no "right" way to feel.
• Address concerns about safety. Be honest and calm about risk. Don't promise that the traumatic event won't happen again. Reassure the child of your commitment to protect him or her.
• Use language the child understands. Small words and short sentences are often best.
• Check understanding. Ask often about what the child is thinking. Encourage him or her to draw pictures if possible.
• Repeat your responses patiently when children repeat their questions.
• Use pictures, such as from the newspaper, and talk together.
• Identify the human element of the tragedy if children ask inappropriate questions. For example, if a child focuses solely on equipment involved, you may want to say this is a sad time because of death or injuries.

Some may need professional help

• Relaxation training, including breathing and imaging techniques.
• Social stories, such as those written and illustrated from a child's perspective.

Condensed from a guide developed by Anne Farrell, Ph.D., and Daniel Crimmins, Ph.D., of the Westchester Institute for Human Development, a center for excellence in developmental disabilities education, research and service at the Westchester Medical Center in Valhalla, NY.

For the full text of the guide, visit the website of the Administration on Developmental Disabilities: www.acf.dhhs.gov/programs/add/Whats.htm

Other web resources: National Association of School Psychologists, www.nasponline.org

American Academy of Child and Adolescent Psychiatry, www.aacap.org

National Association for the Education of Young Children, www.naeyc.org

National Center for Post-Traumatic Stress, www.ncptsd.org

Retracing history helps parents strengthen advocacy efforts

As part of a five-day leadership development series at the Cuyahoga Special Education Services Center in Parma, Terri McIntee incorporates a session titled, "History of the Disability Movement." The history exercise can be replicated in any community.

The session helps parents understand their place in the long line of individuals who have worked hard to win rights and recognition for people from all walks of life, and how those movements interconnect with rights movements for people with disabilities.

McIntee, the parent of a child with a disability, once attended a similar event as she began to advocate. "It really made a big impact," she said. "It seemed to lay out the floor plan for me."

For example, legislation that brought African American children into the same classrooms as white children set in motion years later a rehabilitation act. That act evolved into a law that provided for children with disabilities to attend schools with those who do not have disabilities. Those laws then paved the way for what became the Americans with Disabilities Act (ADA).

"So many people don't realize that parents before them had to fight for what they got," McIntee said. She added that once parents learn that they, too, have an important role in history, it is typical for them to communicate their messages with more conviction, pride and authority, and most importantly, with more results.

Cindi and Dave Klimovich, of Mentor attended the workshop. "We learned two things: how quickly things have developed (in history, for people with disabilities), and how quickly things can also be taken away with amendments to legislation," Dave said. "It's important to learn that things evolve. They can change for the better or worse."

He added that recent years have produced legislation that addresses the needs of very young, preschool-aged children with disabilities.

The history session includes a "Memory Lane" in which participants put dots along an actual timeline. The dots help pinpoint other memories a parent has of past decades within the context of a larger disability rights movement, and places the parents within that history, as well.

"Creating a timeline is an easy and fun thing to do," McIntee said. Look in elementary school books for notations about world or national events, and include some local or state history as well. She hopes to improve upon her timeline concept by asking people to bring in photographs of the various historical events to create a more visual display.

Glenda Pope, of Warrensville Heights, chair of DD Council's Leadership Development Committee, understands the value such an exercise brings to advocates.

In her own life, as an African American with a disability and as a mother of a child with a disability, she likens facing everyday challenges with those of people from past centuries who endured slavery and struggled to secure freedom.

"The program made a tremendous difference for me," she said. "Historically, people with disabilities were considered minorities and were invisible. There was never a thought that we would ever work. We were shut away. Knowing our rights in the ADA is like the Bible for us."

McIntee also invites guests who participated in various movements of the past to talk about their experiences. Guest speakers are easy to find because they tend to still be active in local organizations. "There is someone in everybody's community who has had these (historical) experiences," she said.

For more information, contact: Terri McIntee, Cuyahoga Special Education Services Center, 5983 W. 54th St., Parma, OH 44129, (440) 885-2685, ext. 236, Terri.McIntee@LNOCA.org

Photo captions included: During a "History of the Disability Movement," participants created a memory lane activity; Connie and Clara Sacharow spoke to a leadership development class about the self-advocate movement; Mary Woods, parent mentor from Bay Village, highlights details on a timeline that impacted her values and beliefs.

Airline security must not discriminate

The Air Carrier Access Act (ACAA) and the Department of Transportation's implementing rules prohibit discriminatory treatment of people with disabilities in air transportation. Here are a few examples of accommodations and services that must be provided to people with disabilities. They are condensed from a fact sheet issued October 29, 2001, by the U.S. Department of Transportation:

• Air carriers must provide meet-and-assist service to gates and aircraft.
• People who are not traveling but are assisting passengers with disabilities are allowed beyond screener checkpoints, although they may need a pass from the airline check-in desk.
• Ticketed passengers with their own oxygen for use on the ground are allowed beyond screener checkpoints with their oxygen canisters once the canisters have been inspected.
• The limit of one carry-on bag and one personal bag (purse or briefcase) for each traveler does not apply to medical supplies or assistive devices.
• All people allowed beyond screener checkpoints may be searched. Whenever possible this should be done with a hand-held metal detector, but passengers in a wheelchair may be patted down.
• Service animals, once inspected to ensure that they are not concealing prohibited items, are permitted on board the aircraft.
• Assistive devices such as canes, once inspected, are permitted on board. Augmentative communication devices go through the same sort of security screening process as personal computers.
• Syringes are permitted on board once the traveler documents the medical need for them.
• Personal wheelchairs and battery-powered scooters may still be used to reach departure gates after they are inspected. Personal wheelchairs may still be stowed aboard an aircraft.

If you feel you've been ill-treated, first talk with a complaints resolution official (CRO) for the airline. Each airline must have a CRO who has authority to act on behalf of the airline. If the CRO doesn't resolve the issue to your satisfaction, you may file a complaint by sending an e-mail or a letter to the Aviation Consumer Protection Division: airconsumer@ost.dot.gov or, Aviation Consumer Protection Division, U.S. Department of Transportation, Room 4107, C-75, Washington, DC 20590.

You may download a complaint form from: http://www.dot.gov/airconsumer/problems.htm

RESOURCES

Money and Ideas: Creative Approaches to Congregational Access

Because of budget restrictions, congregations of all faiths often fail to remove barriers and welcome people with disabilities. This booklet, with lively stories and an extensive resource list, moves congregations from thinking why something can't be done to planning how it can be done.

Describes creative initiatives and fundraising strategies used by 50 congregations to become more accessible to people with all types of disabilities. Some of the story lines include:

• Put yourself in the shoes - or chair - of another
• Scouts to the rescue
• Lobby your landlord
• Raise attendance and accessibility at the same time
• Sweat and elbow grease count, too

36 pgs. Softcover. $3.50. NOD, Religion and Disability Program, 910 16th Street NW, Ste. 600, Washington DC 20006-2916, (202) 293-5960, religion@nod.org, www.nod.org