DD Quarterly Summer 2001

DD Quarterly is produced by AXIS Center for Public Awareness.

Redesign of Medicaid services for people with MRDD lays foundation for service expansion and improvements

Recent passage of Ohio's 2002-2003 Budget Bill (HB94) contains provisions that will expand the availability of and make improvements to Medicaid funded services for people with mental retardation and developmental disabilities.

Provisions of this complex bill provide the foundation for redesign of services in the MRDD service delivery system over the course of the next six years, culminating with waiver funded services for more than 10,000 people who currently receive no residential supports.

The principles of self-determination provide the basis for redesign of the Medicaid system. The State is committed to assuring the health and safety of individuals with MRDD, providing them with real choices, and creating a system that assesses the needs of individuals and then assigns a budget to be used in purchasing services.

This article highlights those aspects of the bill and subsequent Medicaid redesign activities that most directly affect the lives of people with developmental disabilities.

Expansion of Waiver Services

The legislation allows County Boards of MRDD to enroll individuals for waiver services with certain priority needs before others on the waiting list. Adults who currently receive supported living or family support services funded entirely by local funds initially will be offered waiver services, thereby freeing local funds to help enroll others on the waiting list.

As local funds become available to "match" or draw down Medicaid funds, individuals on waiting lists may be enrolled according to the following priorities:

• Individuals with caregivers 60 years of age or older
• Individuals under 22 years of age, whose needs for services are unusual in scope or intensity (limited to 200 for the biennium);
• Adults with intensive needs for residential services
• Individuals residing in ICFMR or nursing facilities (limited to 75 individuals)

As always, individuals in emergency situations can be served ahead of others on the waiting list.

The types of services covered by Medicaid are also expanded, and include:

• Adult day habilitation
• Community employment
• Environmental modifications
• Specialized medical, adaptive and assistance equipment
• Habilitation and program management in adult, residential and supported living services.

Service Improvements

• Individuals will be given the opportunity to freely choose all service providers, including for the first time, employment and vocational services.
• Individuals will be able to move from one county to another and expect to receive comparable services. Previously, individuals who moved to another county were not assured of continuity of services and often were placed on waiting lists.
• Individuals will be able to designate a person to assist them with representation, advocacy, advice, and assistance with the day-to-day coordination of services in their service plan.
• Additional funding is committed to improving the delivery of services by existing providers on the Residential Facilities and Individual Options Waivers to address the recruitment, training and retention of direct support and assure the compliance with safeguards that protect the health and safety of individuals.
• Investigations of abuse, neglect and other major unusual incidents will be conducted by an investigative agent employed by the County Board whose sole responsibilities will be to conduct investigations.

To implement these changes, County Boards will assume new roles as designated Medicaid Local Administrative Authorities in each county. Each County Board of MRDD is required to develop and submit to the Ohio Department of MRDD for approval a three-year plan for waiver expansion and service improvements.

The first phase, which is due August 1, 2001, assesses the need for waiver services based on the priorities identified above and changes needed to improve staffing and service delivery to ensure the health and safety of individuals. Phase 2 of the plan, due November 1, 2001, delineates how the plan will be implemented.

Much work remains to implement the provisions of the budget bill. At this time, ODMRDD is proposing the development of two new waivers: one for Family Support Services, and the other to serve individuals with more intensive needs for services, as an interim step to one waiver in July 2005.

The Residential Facility Waiver will close June 2003. Individuals who currently receive services on the RFW waiver will be transitioned into other appropriate waivers.

By July 1, 2003, the Individual Options waiver will be redesigned to address the needs of individuals whose services are very high cost. At that time, individuals on the I.O. waiver will remain on or transition into another more appropriate waiver.

By 2006, the Individual Options waiver will be combined with the other remaining waiver, making one waiver program for individuals with MRDD.

These important changes in the MRDD system came about because of the advocacy efforts of people with disabilities, their families, advocates and professionals who worked diligently to inform policymakers at all levels of the enormous unmet need for residential supports and services.

Ohio's DD Council played a strategic role in bringing people together to advocate for change through the establishment of the Waiting List Coalition, co-chaired by Stuart Warshauer, Ohio Developmental Disabilities Council, and Joan Thompson, Arc-Ohio. Other members of the Coalition included Cerebral Palsy Association of Ohio, Ohio Association of County Boards of MRDD, Ohio Association of Superintendents of County Board of MRDD, Ohio Legal Rights Service, and Ohio Provider Resource Association.

For more information: contact: Your local County Board of MRDD to find out about their plan and how they are addressing priorities and program improvements.

Linda Lewis-Day, ODMRDD's Deputy Director of Medicaid Policy, 1810 Sullivant Ave., Columbus, OH 43223, (614) 466-4437.

Solidarity 2001 delivers on promise to educate, inspire, support

Established in 1991, the conference is by and for people with disabilities, and is the only one of its kind in the nation to address the needs of people with all types of disabilities in a convention setting.

Conference planners sought to develop a wide variety of workshop topics, and succeeded, by featuring 50 presentations that included employment, parenting, housing, health and wellness, assistance dogs, recreation and much more.

This year, Keynoter Greg Smith, founder and host of the syndicated radio program "On A Roll," aired his firstever live broadcast from Solidarity on Sunday evening.

"Solidarity is the only cross-disability, statewide conference in the nation that is so well attended and focused on building a spirit of connectedness within the disability community," he said. "It's wonderful to see so many people with disabilities gathered together in a self-directed, productive setting that beams with pride."

Highlights from some of the workshop include:

Connecting to the Internet

• Community sites such as public libraries, public schools, colleges, hospitals, community centers.
• Program sites such as county boards of MR/ DD, case management offices, workshops, and other nonprofit organizations.
• Log on to www.cnet.com for one of the best Internet resources to learn about computers, and www.mainstream-mag.com/ for online news, advocacy and lifestyle issues relating to people with disabilities.

Presenting Yourself in a Job Interview

• Present a neatly completed application.
• Dress appropriately for a meeting - be clean and neat.
• Have resumes and reference sheets with you.
• Use a firm handshake when greeting a potential employer.
• Smile.

Housing Right and HUD

• People with disabilities should be treated exactly the same with housing issues as people who do not have disabilities.
• Housing organizations must allow for accommodations due to a disability.
• Nobody has the right to ask if a disability exists as a condition of renting an apartment or home.
• Rental agencies are not entitled to medical records of anyone applying for housing.

Living Independently with a Service Dog

• Dogs have to have the temperament for the work, and must be trained specifically for each activity and person.
• Dog owners must have the discipline to continue the training that is initiated by trainers. It's a continuous effort of reinforcement.
• Owning a service dog means that you are training a dog to be "responsive" to you rather than "responsible" for you.
• It is much more recognized in public that working animals have a right to be in workplaces, restaurants, etc.
• Many options are available for individuals to obtain trained service animals.

Ohio Business Leadership Network

• Some businesses today still tread very lightly when it comes to hiring people with disabilities.
• Business needs a better understanding of people with disabilities as it copes with the need for qualified employees.
• Company workforce diversity commitments should include workers with disabilities.
• Businesses that do a good job in hiring people with disabilities need to be continually recognized for doing so, because that recognition will come to the attention of other businesses and increase disability awareness.

Parenting with a Disability

• Give your child the facts about your disability - be straightforward, and they will accept your disability.
• Kids have their own way of communicating with others about disabilities, which they all understand.
• Provide schools with a list of what your needs are as a parent with a disability, and network with other parents.
• Maintain contact with your child's teachers through e-mail, as an additional contact and support.

Dealing with Depression

• Sunlight is important to all of us.
• A clear and concise diagnosis of a condition is the key to working toward a solution or program of care.
Eighty per cent of the people who get a proper diagnosis get better.
• Exercise can help lift a mood.
• Support is very important for anyone experiencing depression.

Closing Luncheon

Independence measured in many ways

"It makes me feel alive, now," she said. "It feels like heaven."

Pearl Johnson, parent liaison of County of Summit Board of MRDD, has known Lewis for two years, and has seen the tremendous difference independence has made.

"At the Solidarity conference two years ago, Amy was miserable and sad. Since then, she's lost 100 pounds, obtained an assisted living apartment, and is working and self-sufficient," Johnson said. "I have seen a withdrawn young lady turn into a beautiful swan in a period of only two years."

In fact, due to Lewis' weight loss, Johnson didn't even recognize her this past May at the most recent Solidarity conference in Columbus.

Lewis, who has seizures and mental retardation, said that in 1999, she felt like "the world was on my shoulders." Now, I feel like the world has been lifted off.

Lewis loves the fact that she does not have to rely on people for transportation. "I can walk to the park, cash my own checks, spend or save my money," she said.

Lewis is artistic, loves color and fashion. Years ago, her grandmother taught her how to sew. This talent enables her to work at Custom Stitches at Summit County's Weaver Industries. There, she makes baby blankets, bibs, micro mitts, Christmas tree skirts and other products.

Lewis has fun with her independence, and part of that enjoyment includes pampering herself.

"I love to get my nails done, and get my hair done," she said. "I even bought myself a diamond ring with the money I earned."

And Lewis can dance with the best of them, stepping out to her favorite Beach Boys, Beatles, Monkees tunes, as well as some current hits. "If I put on Ricky Martin music, watch me go to town," she laughed. She's also an Elvis Presley fan, and has numerous Presley collectibles.

Custom Stitches provides jobs in Akron

Today, Custom Stitches, located at Canal Place, is a center for training, employment, and a dynamic environment for growth and development. The showroom and open workroom allow customers to attach faces to the variety of products being produced. Custom Stitches staff teach sewing skills, but also work on serving the whole person whether that be through quality of life enhancements or general skills.

When the program started, the product line included pot holders, pillows, bonnets and grapevine wreaths. However, the product line has changed constantly due to customer demand and market trends. It now includes wheelchair bags for hospitals, nursing homes and individuals, sand bags for florists, custom tote bags for organizations, and aprons for restaurants.

Custom Stitches also creates custom work for a core of "regular" customers. Employees complete contract interiors work and baby quilts for many people.

The program is looking forward to expanding its marketing at Ohio Mart in October. This event will also provide an opportunity to showcase its services to the people in the community.

For more information, contact Weaver Industries, (303) 379-3660.

My Voice, My Choice Ohio's Provider Report Card

Two key elements of a person-and family-directed system of services and supports are choice and accountability. Individuals and their families must be able to choose their services and supports from an array of qualified providers. Providers must be accountable for the effectiveness of the services and supports that they provide in addition to assuring the efficient use of available resources.

One of the most viable measures of quality is the satisfaction of individuals receiving supports and their families. The Ohio Developmental Disabilities Council recently awarded a grant for Assuring Quality Assurances for Services and Supports to Norwich Consulting Services, Ltd.

The project will be called "My Voice, My Choice." Project's logo was designed by AXIS.

Project Director Susan Dlouhy and Associate Director Jackie Teny-Miller have more than 35 total years of experience working with individuals with developmental disabilities.

My Voice, My Choice will develop a "report card" that will promote informed choice for individuals and their families in addition to accountability by service providers. The project has recruited an advisory committee of consumers and family members that will meet monthly. Their first activity was developing a mission: "To give people with developmental disabilities and their families a voice in making a choice that will support them in having a better life."

Project will test the report card in three counties and work out the problems, prior to statewide use. Presentations at conferences, a web site, and articles in organization newsletters will be used to inform self-advocates, family members, and professionals about the project.

A database will be developed that will compile and distribute the information in an effort to help consumers and families make more informed choices. Technology will play a role in the compilation and distribution of data, but will not be the sole method for distribution of the information. A project web site and consumer-friendly project newsletter will be used to publicize the database information.

The report card will be updated on a scheduled basis once it is developed and piloted. Although this process would be voluntary, participation would be encouraged to facilitate choice for consumers and assure a comparable standard of provider quality.

Members of the My Voice, My Choice advisory committee include: Gary Tonks, Arc of Ohio; Peggy Martin, Ohio Department of MRDD; Teri Derry, APSI; Loretta McCamey, Parent Advocate; Tom Seesan, Stark County Board of MRDD; Joe Price, Self-advocate; Jane Trajanowski, Self-advo-cate; Ann Thomas, People First of Ohio; Fatica Ayers, DD Council; Jenny Rousculp, Southern Ohio Council of Governments; Nancy Trux, OPRA; Laura Glenn, Parent Advocate.

For more information, contact: Susan Dlouhy, PO Box 21774, Columbus, OH 43221; (614) 771-7831 phone/ fax; NorwichCS@aol.com.

Dental project to serve important need

This is why a new three-year dental project funded by the Ohio Developmental Disabilities Council will focus on upgrading oral health training and education in Ohio, making the training specific to serving people with disabilities.

Called "Access to Dental Care," the project will create relationships among the 28 dental programs in Ohio (12 dental hygiene training programs, 9 general/family practice residency programs, and 7 pediatric hospital programs), provide training materials, and train the trainers of others. It will also set up a regional network to provide dental services to people with disabilities. Eventually the project will create a web site to locate local or regional service providers.

Each year, the project will conduct oral health screening during the Ohio Special Olympics program as a way to identify individual needs and make appropriate referrals.

For more information, contact: Edward Sterling, DDS, Nisonger Dental Program, 1581 Dodd Dr., Columbus, OH 43210-1257; sterling.2@osu.edu

Oral health screening popular at Ohio's Special Olympics

Ohio has the third largest Special Olympics program in the U.S., with over 2,500 athletes. Because of the variety of oral health issues among people with disabilities, and because of the likelihood of people with disabilities going untreated, Project Director Edward Sterling, DDS, felt the event was an obvious way to reach those who had needs.

Family support project seeks advocates

In Ohio there are over 2000 children with disabilities who are not living with their families. In addition, there are many other families who need assistance in caring for their children in their own homes.

To address this problem, the Ohio Developmental Disabilities Council awarded a grant to Ohio Legal Rights Service (OLRS) to examine Ohio's family support system and to frame and implement an Advocacy Plan to support what works well and improve what does not.

The project is trying to change the support system in Ohio to one that is easy to access and is family driven and family controlled. You can assist in this system change by completing a survey and becoming a family advocate.

Survey seeks family input

Family Support Collaborative

This group, called the Family Support Collaborative (FSC), believes that all children can and will live in a family, preferably their birth family, which is safe, nurturing and permanent, if that family is adequately supported.

The statewide advocacy plan features four major tasks designed to improve family driven and family controlled support services in Ohio:
1. Establish a single point of entry for families to learn about and apply for supports.
2. Reinvent the system so fami-lies determine and control the supports and services.
3. Develop an information technology plan that will make sure families are receiving and benefiting from supports.
4. Recommend policy and legislative changes that will guarantee these supports and ensure that families have meaningful choices.

Family advocates needed

To become an advocate and help spread the word to families and policymakers, contact the project director at one of the numbers listed below.

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

www.state.oh.us/olrs/fsc

Fund encourages leadership and skill building

DD Council encourages these types of experiences as a way of enhancing individuals' knowledge and providing a "seat at the table" where often they are left out.

Karen Golden, Westerville, used funds to attend an Autism Conference in Atlanta. She writes, "My husband and I are overwhelmed by all the information and materials we received. I am so thankful that he was able to attend with me because I would not have been able to explain all the details of the new developments on autism." She goes on to say that they are very excited about the many options they learned about to increase their son's quality of life.

Cincinnati mother Meg Kane thanked Council for sponsoring her participation at the HCFA Conference in Washington, DC. She described the conference as "focused on what people were doing throughout the Nation as 'promising practices. ''' Sessions covered access, quality improvement, choice and responsibility, and whole person support systems. Kane continued, "Bob Kafka described the process of getting someone out of the nursing facility as a cosmic confluence, making everyone realize that without both housing and services at the same time, moving folks from facilities is next to impossible."

Myrna Torres, Sheffield Township, used funds to attend Solidarity '01. She chose workshop topics that she was interested in, and took home many good suggestions. A few that she cited in her report to Council included:

• When people communicate with their legislators, they should know the name and number of the bill. This way, the conversation can lead to action.
• It's important that person-centered planning teams work with employers to decide on what type of job each person with a disability can do.
• People are 100% self-employed when they work 80 hours per month. People who are self-employed must decide how much they want to do and the amount of hours they want to work per week.

Request an application

Priority is given to people who have some of their needed funds. After attending the event each person who received money must turn in appropriate receipts and a report summarizing the event.

For more information, or to request an application, contact ODDC at one of the numbers or address below.

Five key qualities to look for in a new board member

Many people look good on paper. But how do you know they will make good board members?

To help identify stellar board candidates, be sure they possess these five qualities:
1. Leadership orientation. Leadership is hard to teach, so be sure to look for people who already have experience leading others (e. g., service on other boards or in business).
2. Desire. You need people who are willing to work hard, not rubber-stampers. Make that clear to prospects up front and be sure they want to invest the energy.
3. Networking ability. Board members can be your greatest resource. But that's only if they know how to network. Look for people with connections who are willing to talk to their friends and colleagues about your nonprofit.
4. Ability to plan ahead. Your organization won't survive long without planning for the future. It's essential that board members know how to make long-term plans.
5. Business knowledge. Many nonprofits operate like for-profit businesses these days. If new board members have concrete business knowledge, they'll be able to provide better guidance in this area.

Pickaway County joins SOS project

The parent mentor within the school system identifies students who are not eligible for services and refers the family to the SOS program. Internships are designed based on student interest and skill, and on available community resources. Students are paid either by the employer or with a stipend from the program. Supports, such as job coaching, also can be provided by the program.

In Ohio, the Governor's Council on People with Disabilities is the lead agency for the program. The Ohio Developmental Disabilities Council is providing grant funds to help the program grow.

Beth Miller, 17, participated in a two-part internship experience. Her first placement was with Pickaway Manor Care Center as an activity aide. Currently, she is working with the Red Cross. She will return to high school this fall.

Shawn Price, 20, completed his internship with Pizza Hut. He has graduated from high school and is working as part of a janitorial crew for Circleville Bible College.

Becky Richardson, 22, interned at CVS Pharmacy. She has since graduated from high school and is working part-time at McDonalds.

Cindy Johnson, 20, worked as a student intern at Health Care Logistics. She completed her high school graduation requirements and was hired permanently by the company. She has since moved out of the county and left this employment with a good work record.

For more information, contact: Janet Miller, SOS Project Director, 4550 Indianola Ave., Columbus, OH 43214, (800) 796-8498, (614) 267-5071, (614) 267-4550 fax, cpo@iwaynet.net or to learn more about the Start on Success program, initiated by the National Organization on Disability, visit: www.startonsuccess.org

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

The Ohio Developmental Disabilities Council is a planning and advocacy group of 28 members appointed by the governor. ODDC receives and disseminates federal funds to create visions, influence public policy, pilot new approaches, empower individuals and families, and advocate system change.

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

Call to Service March recognizes volunteers

The event highlighted the "Call to Service March" sponsored by the Fairfield Center for Disability. Leading the 300-mile walk from Cleveland to Cincinnati was Worldwalker Steven Newman.

Terry Berringan, Executive Director of the Fairfield Center, initiated the march to raise funds for programs and services for Fairfield County residents with disabilities. He explained, "This march and award ceremony celebrate the agencies and volunteers who help Ohioans with disabilities lead more enriched and independent lives."

Speaker Steve Newman spoke of his life and travels. "I always thought life was a gift, something to be explored." In 1997-98, Newman's love of life led him to walk around the world. He holds the Guinness World Record for this feat.

During those years, he lived with over 400 families and remembers the strength of their human spirits - even in the most oppressive places. "So many of them wanted to have what we have in this country," he says.

"Ohio is my home. It's where I took my last steps from around the world. I didn't run off to live in some exotic place."

When Newman had 20,000 more miles to go on his journey, he sat down to ponder whether he could finish. But he reminded himself that if he believed in himself, things would happen. He continued, "The things that kept me going were the simplest - a smile, a glass of water, and simple acts of concern and kindness."

He believes these are the kinds of things volunteers and agencies can provide.

State Auditor Jim Petro opened the ceremonies by reminding the audience "It is the responsibility of all of us to help others who've not been invited to the table."

Petro told the participants, "Your career is more than business. It's a call to service." Most other countries have far fewer volunteers than we do in America. Typically, 49% of the adults in the U. S. volunteer; while in Germany only 13% volunteer.

Petro is proud that during his term, the volunteer rate of his 950 employees has gone up 700%. And this commitment was accomplished on workers' own time.

"Our nation's success is built on teamwork. We must reach out and be a team, much as Steve and Terry are doing here today," said Petro.

Volunteers Jan Blatz and Gail Baldwin were recognized for their many hours of service to Central Ohio Radio Reading Service (COORRS). They created a program about common things you should know if you become blind and offer support over the radio.

Leader of the Call to Service March, Steve Newman, said "I get a little upset when people come up to me and say, 'I can't do this. ' In America there are no excuses; no one should be without dreams in a country like this."

Frank Gattas was honored for establishing the Solidarity Conferences. In the late 1980s he suggested to RSC that they do something no one else had done. "Let's hold a conference for people with disabilities of all kinds - and let them run it and be in charge." Gattas threw himself into the project and traveled everywhere in the state gathering support. Now, six conferences later, thousands have benefitted from his dedication and enthusiasm.

Mickey Lesko of the Buckeye Chapter of Canine Companions for Independence (CCI) was honored for her years of service in talking to schools and groups about CCI. She also has trained five puppies for CCI. Steve Newman and Jim Petro congratulated her at the ceremony.

Marc Guthrie announced the first award recipient, Dick Steinbrunner. Steinbrunner worked in the MRDD field since 1958, and currently serves as a board member of United Cerebral Palsy of Central Ohio. Jim Petro presented the plaque.

For more information, contact: Terry Berringan, Fairfield Center for Disability, 681 E. 6th Ave. Lancaster, OH 43130; (740) 653-5501.

A new day for TRS access

On October 1 of this year our country begins a new era of telephone access. That is the day that the familiar calling shortcuts of 911 and 411 will be joined by 711 - the new three digit number for access to all Telecommunications Relay Services (TRS).

Want to call someone who uses a TTY? Just pick up your phone, dial 711, and you're automatically connected to the TRS operator.

You're a TTY user who's traveling out of state and want to make a call? No need to learn the state's TRS access code, just dial 711.

Certainly, for the deaf, hard-of-hearing, and speech-disabled people who have been using TRS for years, the convenience of dialing three digits instead of seven or ten is obvious.

But 711 is good news for everyone, not just people with disabilities. Both voice and TRS users will be able to initiate a call from any telephone, anywhere in the United States, without having to remember and dial a seven or ten-digit access number. We at the Commission hope that this easy accessibility will encourage everyone to take advantage of TRS to keep in touch with friends and associates who use TTYs.

Under the new rules adopted last year by the FCC, 711 TRS dialing must be provided by all telecommunications carriers in the United States, including wireline, wireless, and payphone providers. Our rule also encourages all PBX suppliers to configure their systems for 711 access to TRS. If consumers find that they are unable to get 711 TRS access after October 1, please contact: Consumer Center, 1-888-CALL-FCC (v); 1-888-TELL-FCC (tty); access@fcc.gov.

Developmental disabilities focus of journalism project at Ohio Wesleyan University

Students in Jim Underwood's editing class interviewed families of people with developmental disabilities, conducted research, and wrote stories. Students exchanged stories and acted as copy editors.

Student photographers took pictures of the families, and a panel of judges evaluated both stories and photos.

Delaware County Board Superintendent Bob Morgan said the board hoped the students would write about their subject's everyday lives. "We don't want heroic stories," he said. "It's basically everyday life and how common it becomes."

• Educate the community about issues facing Delaware County citizens with disabilities and their families;
• Provide students with an opportunity to complete a serious writing assignment that could be published;
• Have these future reporters and editors gain insight and understanding into the lives of people with disabilities and into a service system that supports these individuals.

Underwood welcomed the opportunity to get his students into realworld situations. He said the challenge for the students was to spend time with their subjects while remaining objective.

Students were matched with volunteer individuals and families that receive services from the DCBDD. Students interviewed the families and, if necessary, other professionals working with the person with the disability.

Ohio Wesleyan University journalism students Taylor Pope and Nikki Lee won $300 each for a writing and photography project about people with developmental disabilities.

Student reporter Nikki Lee experienced some early qualms. "I was kind of intimidated by it at first," she said, but the assignment wasn't as difficult as she had thought it might be.

Lee's story was about Thomas Hohman, a youngster who has autism. Lee said the Hohmans were comfortable with the story, "very eager to talk to me and show me what their life was like."

Underwood said one of the strengths of Lee's story is that she went "outside the family" to talk to Thomas' teachers. The number of voices made the story rise above the others.

Student Taylor Pope said the challenge for him was to remain neutral around family members who "have their own set of goals."

His story about Rachel and her brother Matthew brought him second place in the writing contest and first prize for photography.

Pope wrote, " Even the small falls a toddler or baby takes when they are learning to walk will cause blisters on patients who have epidermolysis bullosa. Besides being covered from head to toe in gauze, Rachel wears blue overalls and kneepads to soften the blow if she falls."

Taylor Pope's prize-winning photographs of Rachel Barber, 2, show Rachel wrapped in gauze, seemingly unaware of the camera and playing like any other toddler. Rachel and her 6-month old brother have a disorder that causes their skin to blister or fall away.

"I definitely learned a lot," Pope said.

Morgan said he was pleased that so many families were willing to open their homes to young journalists, and that the families interviewed were honest in their assessment of the board.

DCBDD hopes to educate the community about issues facing people with disabilities living in Delaware County while giving the students the opportunity to be published. The contest has prompted several local newspapers to publish articles and interviews with the students.

Nancy Smeltzer of the Ohio Department of MRDD, one of the project judges, called the project "innovative" and said the students' efforts were evident.

"What a good opportunity to teach person-first language and real-life experiences of people with disabilities," said Sue Willis of AXIS, another judge.

For more information, or to request a copy of the stories on disk, contact: Wendy Mack, DCBDD, 1000 Alpha Dr., Delaware, OH 43015; (740) 368-5800; (740) 368-5809 fax.

Excerpts from ten page, first-place story about Thomas Hohman

The doors opening onto the playground at Liberty Community Center burst open and a five-year old preschool student runs out into the crisp spring morning. He first hurries over to the bright yellow slide, then decides to try the swing instead. Legs swinging and a bright smile on his face, he is simply a little boy enjoying recess.

However, move this little boy into another setting, such as a classroom, a store, or even his own home and a few subtle differences can be seen between him and other children his age. The reason for these differences? This child, Thomas Hohman, has a disability called Autism....

For the first year and a half of Thomas' life, parents John and Mary Lynn believed their son to be a typical young child. Thomas was a happy toddler whose vocabulary was up to about ten words. However, in the year between his first and second birthdays, Thomas' progress came to a halt. His parents began to notice a decline in his playing and interaction with others; the few words he had learned, he ceased using altogether....

Thomas lost the communication skills that most people take for granted. He was incapable of making simple requests. For example, if he was hungry, he would lead one of his parents to the kitchen cupboard. Once at the cupboard, however, Thomas was unable to speak or point to indicate what he wanted. It would then become a guessing game, with Mary Lynn or John taking out each food item one at a time until they happened upon the specific food that Thomas wanted....

Although the Holmans at last identified their son's problem, they and Thomas were just beginning the long and difficult road ahead. Mary Lynn and John had been given a diagnosis but that was where their information ended....

Know your consumer rights

• Pyramid schemes are illegal in the state of Ohio.
• Fraudulent people operate out of other states, but call into states like Ohio.
• You should never pay money in order to win a contest.
• Rid yourself of telemarketers by telling them: "Please put me on your do not call list." They must abide by your wishes due to federal communications laws.

All people with disabilities face their own unique challenges, but consumer fraud or deception should not be one of them. To that end, Attorney General Betty D. Montgomery's office has a fulltime staff devoted to filing and mediating complaints from Ohio consumers. Anyone can be the target of consumer fraud or deception, but people with disabilities are particularly vulnerable.

While most businesses are honest, there are unscrupulous people who may take advantage of an individual's disability, such as coercing someone who has limited vision or impaired cognitive ability to sign a contract.

The Consumer Sales Practices Act, passed in 1972, prohibits sellers from making false or misleading statements about the nature of their businesses, products, or services, about the prices of their goods, or about the terms of a transaction.

The following are common areas of complaints filed by consumers with disabilities. While not all constitute outright or intentional fraud, these types of transac-tions call for extra vigilance when conducting business:

Home repairs/improvements

• Read and understand all papers before you sign. Ask a trusted friend or family member to go over any terms or language that you do not understand.
• Be wary of contractors who offer a special discount because they're already "in the neighborhood." Also be leery of high-pressure tactics to take advantage of an offer immediately or risk losing a substantial discount.
• Don't put down a large deposit on a repair or improvement. Put a reasonable amount down, but don't pay the rest until the job is done to your satisfaction.
• Contractors may perform shoddy work on improvements such as ramps.
• Remember you have a three-day right to cancel a home improvement contract if it results from a door-to-door solicitation or if a second mortgage is taken to finance the transaction.

Medical equipment

• Ask about any discounts that apply upfront or they may not be valid.
• Ask about trial periods. For example, hearing aids usually have only a 30-day trial period, but that may be extended to 60 to 90 days.
• Be sure you understand all terms of purchase agreements or contracts.

Business opportunities

• Be wary of "work-at-home" schemes that promise maximum pay for minimum hours. These "biz opps" may require a substantial investment of money to purchase or lease equipment such as software. Scam artists may say there is little outside work required, when in reality there is. When a person is unable to perform the work, he or she loses any investment made.
• High-tech machines have made envelope stuffing obsolete. Don't fall for this one.
• Craft assembly at home rarely measures up to the "standards" set by the scam operator, thus assuring that you won't get paid for your hard work.
• Examine want ads carefully and remember that most work-at-home schemes are scams. These ads are found mainly in weekly papers because the ads are cheaper than in dailies.

Credit card fraud

• "Easy credit" may come at a high price if you pay a fee to apply and are still denied credit. Legitimate lenders never "guarantee" credit for a fee paid in advance.
• Credit card companies may issue cards to people with disabilities with no regard to how they will make the payments. Then collectors harass them.

If you suspect you have been a victim of consumer fraud, contact the Attorney General's office to file a complaint: (800) 282-0515 or www.ag.state.oh.us

Telemarketing

• Do not give personal or financial information over the phone to anyone you don't know.
• Be wary of high-pressure sales tactics such as prizes, awards, and deals that are available only if you "act right away."
• Request written information from any organization soliciting you over the phone and review it before you act.
• Don't send money to claim a lottery prize that you don't remember even buying.

Talking ATMs available

For information about this program, or to find the location of one near you, call Bank One toll free: 1 (877) 241-8665.

Are you registered to vote?

You may sign up at any state-funded program office, such as a county board, an independent living center, or a vocational rehab office. Or you may request a voter registration form from: Ohio Secretary of State, 180 E. Broad St., 15th Floor, Columbus, OH 43215; (877) 767-3453; (614) 752-4360 fax; e-mail: election@sos.state.oh.us

Businesses eligible for tax credit

Businesses with 30 or fewer full-time employees, or total revenues of $1,000,000 or less, may use a credit of up to $5,000 a year to offset costs of altering facilities, using interpreters, or other steps to improve accessibility for customers or employees.

Read about the initiative at www.whitehouse.gov/news/freedo-minitiative/index. html.

To order a free "ADA Guide for Small Businesses or Tax Incentive Packet," contact: 800-514-0301 v, 800-514-0383 tty, www.usdoj.gov/crt/ada/adahom1.htm.

RESOURCES

Managing Personal Assistants: A Consumer Guide

• They are straightforward but polite in communicating their needs.
• They pay attention to important details.
• They follow logical, sensible rules for controlling their lives and their environments.
• They are flexible in their schedule and their attitude.

Manual will help you, your family, and friends, develop and manage a personal assistance system designed for your individual needs. It shows you how to assess your needs, recruit, hire, train, and fire personal assistants; be a good manager; and identify funding sources and tax responsibilities. Clearly identified sections allow you to use any or all parts of the manual. Sample forms and charts may be copied.

Softcover, 65pp. $11.95. PVA Publications Center, PO Box 753, Waldorf, MD 20604; (888) 860-7244; www.pva.org

Ohio Guidelines for Educational Interpreters

The Ohio Department of Education (ODE) developed these guidelines to help school districts provide appropriate educational interpreting services to children who require them.

It includes best practices in ethical conduct, qualifications, and roles and responsibilities. Easy to use sections include:

• Primary role of the educational interpreter
• Roles and responsibilities of the school
• Professional development

The appendices include a list of the responsibilities of the educational interpreter, resources on education interpreting, and a glossary of commonly used terms.

Softcover, 48pp. Free. For copies or information on workshops and trainings, contact: ODE, Office for Exceptional Children, 25 South Front St., Columbus, OH 43215; (614) 466-2650.

Also available from your local special education regional resource center.

What Psychotherapists Should Know About Disability

(Book review by Mary Lee Stocks, LISW, American Psychotherapy Association)

Dr. Rhoda Olkin's new and comprehensive text is a resource that is long overdue. Using her own training and expertise as a therapist, social researcher, and theorist in concert with her life experiences as a person with a disability, Dr. Olkin opens vistas on the disability experience that are seldom addressed in clinical training programs.

Key issues in the text revolve around a social theory model that views disability as a minority, rather than a medical issue. As Olkin notes: "When people without disabilities are asked what they think are the major problems for people with disabilities, they cite the impairment (i. e. the physical limitations). When people with disabilities are asked the same question they tend to point to the social barriers and pervasive negative attitudes of others toward persons with disabilities."

The book not only forthrightly discusses stigma and discrimination, it also addresses issues of great importance to people with disabilities which traditional clinical psychotherapy training programs infrequently address. These issues include accessibility and assistive technology; disability rights and laws; and perhaps more importantly, issues regarding romance, dating, sexuality; parenting and family issues; and disability-specific issues such as living with a chronic condition, living with pain, and problems of aging with a disability.

Additionally, Olkin clearly describes appropriate use of language and disability etiquette, gives down-to-earth case examples, and provides an impressive bibliography.

Dr. Olkin's book is about working successfully with people, not with "disabilities." It could be a primer for any study of psychotherapy; but its "insider information" and discussion of the common experiences and needs among people with disabilities should make it required reading for anyone interested in or working in the helping professions.

Softcover, 368pp. $22.00 + $4 S&H. The Guilford Press, 72 Spring St., New York, NY 10012, (212) 431-9800, www.guilford.com

All resources described in DD Quarterly are available for loan from the AXIS library. Call (800) 231-2947.

Disabilities, Dragons and Other Magical Discoveries: A Kid's Guide to Understanding and Living with Disabilities

This guide for young people ten years or older is compact, easy to read, and liberally illustrated with cartoons. It is for them, not about them, and is designed to improve their understanding of their bodies and abilities so that they are more confident, more independent and able to make better choices in daily life.

Includes sections on cerebral palsy, muscular dystrophy, spina bifida, and spinal cord and brain injuries. "Social Stuff" explores disability and death, education and careers, family, friends and the rest of the world, independence, and understanding yourself. Explains how a body works in sections on kidney function, contractures, scoliosis, hydrocephalus and shunts, seizures, and senses and the brain.

Spiral bound, 70 pp. $19.95 plus $3.50 S&H. Devinjer House, PO Box 130, Sparta, Ontario, NOL2HO, Canada, (519) 685-8703; www.tvcc.on.ca

Different Moms - Rory Kennedy and Liz Garbus, Moxie Firecracker Films, 1 Hr VHS

Thousands of women around the country are "different moms." Parents with developmental disabilities have about 120,000 children each year. About half of these children stay with their birth parents.

This video introduces you to three mothers with developmental disabilities; tells their stories, struggles and joys in bringing up children. It also shows the huge difference community-based support for parents with developmental disabilities can make in the lives of parents and their children.

Use this video in your community to advocate and educate about the needs of parents with developmental disabilities.

$21.35 + $6.40 S&H. The Arc of the United States Publications Desk, 330 Pleasant Valley Lane, Suite C, Arlington, TX 76015; (888) 368-8009; www.TheArcPub.com

As a public service from The Arc of the U.S., a free copy of the video and its resource guide is available to all agencies providing programs to parents with mental retardation, (S&H is charged) and is available by telephone orders only to (888) 368-8009.

Sexuality: Your Sons and Daughters with Intellectual Disabilities

"The parents and authors who have shared their experiences and expertise in this book have done so with intelligence and a deep-rooted desire to assist everyone in making life as typical and enjoyable as possible for our children." - From the Foreword by Marion Burke.

Parents play a key role in making sure their child develops a healthy sexuality, that sense of self-confidence that helps make us all well-adjusted individuals. In this touching and lively book, you'll learn how to interact with your children in a way that increases self-esteem, encourages appropriate behavior, empowers them to recognize and respond to abuse, and enables them to develop lifelong relationships.

Parents share the joys and challenges of raising a child with an intellectual disability; individuals with disabilities explain, too, what is important to them.

Soft cover, 224pp. $24.95. Paul H. Brooks Publishing Co., PO Box 10624, Baltimore, MD 21285-0624; (800) 638-3774; www.brookespublishing.com

Save the Date!

"People with Disabilities Unified for Medicaid Buy In"

Topics will include: What is the Medicaid Buy In Option? How can adopting this initiative increase employment opportunities for people with disabilities? What action can advocates and professionals take to establish Medicaid Buy In in Ohio?

Presentations by National leaders in Medicaid Buy In, Representatives from states using Medicaid Buy In, Ohio Legislators, Ohio Agencies and Departments, and panel of experts. Banquet Luncheon

After August 20, watch your mail, check DD Council's website at www.ohio.gov/ddc or call (800) 766-7426 for additional information. Space is limited. Reservations required. Cost: $25; stipends available.

Ohio Developmental Disabilities Council Improving the lives of Ohioans with disabilities

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; Website: http://www.axiscenter.org

AXIS STAFF : Sue Willis, project director; Vince McGuire, photographer; Shannon Szabo, website; Kelley Femia, designer; Beth Kramer, writer/editor; Kim Ryan, audio recording; Joyce Talkowski, assistant; Donna Kinney, assistant

Copyright 2001. Content may be reprinted upon request.

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