DD Quarterly - SPRING 2005

The Ohio Developmental Disabilities Council is a planning and advocacy group of 35 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.

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www.ddc.ohio.gov

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 on back cover.

ODDC Mission

DD Quarterly is funded under P.L. 106-402 in accordance with the goals established by the Ohio Developmental Disabilities Council (ODDC) and ad-ministered by the Ohio De-partment of Mental Retar-dation and Developmental Disabilities (ODMRDD). Endorsement by ODDC and/or ODMRDD is not necessarily inferred.

Why we should have a housing association

I’ve been exposed to more information about housing during the past six months than in the last twenty-five years. As a result, I have learned several things:

Ohio is unique in its capital housing program for people with mental retardation and other developmental disabilities. We have 57 housing corporations serving 79 counties, involving 857 properties and serving over 2,200 tenants. That is a pretty impressive network and something to be proud of!

Nonprofit housing corporations associated (perhaps too closely) with County Boards of MRDD vary widely in how they operate and in the expertise of their employees. Housing issues easily can become health and safety issues. It is scary to realize that housing nonprofits are often operated by people with a social work background, without any particular expertise in housing. Nor do these nonprofits have anyone to turn to for technical assistance or to help them with issues such as development, maintenance, safety inspections, management or anything in between.

Not only is there a lack of rental housing for people with low incomes—which covers most people with disabilities— but also there is an even greater lack of housing for people with significant disabilities. Because Medicaid waiver programs for community-based housing do not cover housing costs, it is even more important to develop and maintain community housing in a planned and intelligent manner.

We need an association to set standards, develop sample polices and provide technical assistance. If we do not take a proactive approach to strengthen the quality and safety of our current housing stock, it is only a matter of time before a tragedy will cause policy-makers outside of the MRDD system to impose reforms. Management of housing is a full-time business that needs sophisticated support.

First association activities

One of the first things a housing association needs to do is to survey existing housing stock to identify and prioritize problem areas. What is the quality of homes as purchased, and the quality of maintenance since purchase? How many of the homes have a mold problem that needs to be mitigated? How many have over-sized bulbs in light sockets that have compromised integrity of the homes’ wiring? How many have weakened the structural integrity of the house as a result of modifications made to accommodate an aging population? A checklist needs to be applied to a representative sample of the homes to identify what issues to tackle first.

There are already indications that over half the damage done to these homes is done by staff. We need initial and periodic training for staff about how to maintain a home, and we need a maintenance manual all of the housing nonprofits can refer to.

Other first year activities might include developing a directory and distribution list of the various housing corporations (recommend both MRDD and MH), begin distributing a periodic newsletter, create a listserve to share questions and answers, create a website, coordinate regular meetings, and coordinate a statewide housing conference.

No need to reinvent the wheel

• Flooring, wall coverings, windows, doorjambs, hinges, showers, doors, driveways, appliances, toilets etc. that are the most durable for various populations.
• Accessibility modifications (i.e., design, features, and products) that should be included.
• A list of safety features (fire alarms, sprinklers, carbon monoxide detectors, etc.) that should be installed and when.
• Ideas about rent structures that might help pay off any outstanding mortgage and allow for a reserve to use for unanticipated expenses.
• Types of property inspections that should be done (examples: radon testing, heating systems, foundation), how often and by whom?
• How to deal with problem tenants/staff (example: drug use on the premises).
• Type of property insurance and title insurance that may be needed.
• Ideas about which items should be funded by separate fundraising activities.

Getting the association started

To quote someone whose knowledge I respect on this issue, “With housing looming as a major challenge to our field, we can’t afford to stand on the sidelines and think someone is going to solve this for us. Building a strong nonprofit infrastructure helps to develop the needed housing expertise that our field is sorely lacking.” We need to act now to create a housing association!

For more information about the concept of a housing association, and for those who might be interested in contributing, please contact Steve McPeake, President and CEO of North Coast Community Homes, (216) 662-1880 or e-mail: smcpeake@ncch.org.

DD Council supports efforts to further Early Childhood Mental Health (ECMH) Initiative

The Early Childhood Mental Health (ECMH) State Plan for Ohio continues to receive positive feedback from professionals and parents from throughout the state underscoring the importance of access to mental health programs and services for the birth to six years age group.

Seven forums were held in July and September, 2004 in Akron, Bowling Green, Chillicothe, Cincinnati, Columbus, Urbana and Zanesville under the auspices of the Ohio Department of Mental Health (ODMH) in order to gauge the thoroughness of the plan. Each forum lasted about four and one-half hours.

Marla Himmeger, program administrator of ODMH’s Office of Children’s Services & Prevention, oversaw the forums that were logistically produced with assistance by Voices for Children, located in Cleveland. “We took information out to the community to let them know what the plan was, and to get their input,” Himmeger said.

Feedback obtained from those surveyed has been very good. “A lot of what we found was that we really didn’t have to make a lot of changes in the plan, and that learning about the plan was important to them (the forum participants),” she added. “They thought it was pretty well thought out and comprehensive. We are excited that the people recognized that.”

The ECMH Initiative has been guided by an Advisory Council featuring numerous children-oriented agencies. The DD Council is represented on that advisory group and supports initiatives that address the mental health and well-being of children.

“One of the challenges of this issue is the development of an age-appropriate assessment tool that makes it possible to identify and treat infants and toddlers who are suffering from early childhood mental and emotional disorders,” said Kay Treanor, Council’s Children’s Issues policy analyst. “Although there are instruments currently being used, there is a need for further research of assessment tools that prove to be accurate and lead to early intervention and treatment.”

The State Plan has a heavy emphasis on early intervention that also includes goals, objectives and strategies based on a continuum involving children and parents. It strives to produce high quality mental health services and supports for each.

For instance, the plan seeks to develop a framework for comprehensive early childhood care that includes evidence-based prevention and intervention. It also seeks to increase the numbers of young children screened for social-emotional development as a part of standardized assessments beginning with at-risk populations.

The plan addresses the needs of caregivers providing for parental depression screenings, as well as providing training to providers working with young children and their families so appropriate referrals can be made. It also pulls together resources and in-service contacts so professionals can be sure to be up-to-date with workshop and conference information as well as best practices models.

The plan includes an effort to increase awareness of available community medical services. Himmenger noted that many parents and professionals attending the forums learned about services they had not previously been aware of.

“A lot of the people had no idea what was happening in their own communities,” she said.

Treanor said that as the plan was being developed, statistics showed 25-30 percent of young children are not ready for school due to mental or emotional problems. Frequently, with such unpreparedness, these children are then placed in special education programs.

Himmeger said that in 2004, Ohio’s general public mental health system served 9,086 children aged birth to five.

Parent and caregiver involvement as well as early literacy have been found to help children who are in situations that foster decline rather than advancement.

At the forums, not only was the question “Who’s here?” asked, Himmeger said, but the question, “Who do we need to involve?” She said it is vital that physicians, teachers, child welfare workers, and those in the juvenile justice court systems also are aware of the importance of early childhood mental health issues.

Grantee promotes ECMH awareness

DD Council, in its effort to reach out and expand awareness of children’s developmental issues, awarded the Infant and Toddler Mental Health grant to the Children’s Resource Center (CRC), located in Bowling Green.

The focus of the grant, which came to fruition through networking and information exchanges between Kay Treanor, Children’s Issues policy analyst and ODMH program leader Marla Hemminger, focuses on:

• Identifying appropriate assessment and screening tools;
• Increasing the awareness of the social-emotional development in young children; and
• Educating healthcare professionals such as nurses, nurse practitioners, pediatricians and family practitioners to identify developmental concerns early in a child’s life.

The CRC will collaborate with the Health Department’s Help Me Grow program and public school preschool classes, as they work to transition children.

From July through December 2004, the Center saw 338 children, and 164 parents and caregivers.

The Wood County-based center is a comprehensive private non-profit providing out-patient counseling, community support with in-home services, a six-bed residential unit, and partial hospitalization for behavioral health issues. The CRC provides on-site consultations to caregivers and parents, and conducts individualized care as well as classroom visits.

For more information about CRC, visit: www.wcnet.org/~crckids; email: crckids@wcnet.org or call: (888) 466-5437, (419) 352-7588.

The future of developmental centers in Ohio—the need for a plan

Over the years I have avoided writing about developmental centers because they are controversial. No matter what people write about them, someone finds it offensive! During my term at DD Council, I am not aware that the council has taken a formal position with respect to the centers. This article does not break with that silence in the sense that it does not address whether developmental centers should be closed.

Once again this past year during review of the planned closure of Springview and Apple Creek Developmental Centers, I heard advocates who supported continued existence of all developmental centers in Ohio speak with suspicion about the Department of MRDD.

“Surely,” they said, “the department has a master plan for closing additional developmental centers.” I can say with confidence that I have never heard of such a “master plan,” and I have every reason to believe leadership in the Department of MRDD when they say there is no such plan.

I now propose that a plan for the future—not closure—of Ohio’s developmental centers be created. The plan would be the result of projecting current trends, and would be created by all stakeholders—those who wish to close all developmental centers, those who wish to keep them open, and all other interested parties. The plan should be subject to revision at least every two years by a similar group of stakeholders, possibly in conjunction with development of the next Department of MRDD budget.

Stakeholders would evaluate:

• The waiting list at each institution, as well as current trends, to see how many people are choosing state congregate facilities;
• How many capital dollars would be needed to maintain quality at each center;
• The regional dispersal of centers;
• If the centers are necessary to maintain a “safety net” of services; and
• Any other factors the stakeholders find relevant.

If trends and marketplace demands hold for a certain length of time, the plan would recommend opening, closing or upgrading specific development-al centers.

Planning the future of our state’s developmental centers is something we should be proactive about. It should not be a decision that is forced on our policymakers by a state fiscal crisis. But if it is, it should be a decision informed by the deliberations of all who have a stake in such a decision. It’s time to develop a plan.

Where’s the beef? Wigal has it!

Usually, Micro-Enterprise grants are awarded to adults. But welcome to the world of 11-year-old Sylvia Wigal. She received a grant to help her raise and sell feeder calves!

Wigal, who lives on a farm in Ostrander, Ohio, with her parents and an older brother and sister, is a go-getter. She’s accustomed to taking the lead. She has goals, and she’s pursuing them, setting an example for those of us who allow our futures to be determined by circumstance.

“Two years ago,” said her case worker, Debbie Schooley, “Sylvia became the first person in a wheelchair to show a large animal at the Delaware County Fair.” She showed a feeder calf. In 2004, she was back, showing two dairy feeders and two beef calves.

Now, in 2005, Sylvia has a beef feeder named Handsome and a breeding heifer, Mabel. Both were born in the spring of 2004 and should be ready to show at the 2005 county fair. These two calves will then weigh more than 1000 pounds each. Sylvia eventually wants to breed her own heifers, so she plans to keep Mabel.

In December she became the first non-adult to receive the Nancy Richards Self-Advocate of the Year Award from the Delaware County Board of Developmental Disabilities. Schooley said Wigal even participates in her own IEP (individual education plan), which typically is something parents do on a child’s behalf. “It’s something she really wanted to do,” said Schooley, who works for the Delaware County Board.

“We encourage her to be independent,” said Sylvia’s mother, Becky. And it seems that nothing stops Sylvia, who deals with the effects of spina bifida. “She begged us to mow the lawn,” said Becky. “And now she loves to drive her adapted zero-turn-radius mower.”

Sylvia, her brother, Austin, and sister, Andrea, have a dream: Sylvia will become a veterinarian, and Austin and Andrea will work on their grandparents’ farm, with Sylvia as the vet. Becky and husband/dad, George, are proud of their children. Becky said, “The proposal and business plan for the Micro-enterprise Grant? Those three kids helped write it much more than my husband and I.”

Sylvia’s idea is to gain as much experience in animal science as she can and to learn how to make her feeder-calf projects profitable. She believes this will enhance her success as a veterinarian. “I can be self-sufficient in adulthood if given the opportunity to pursue this passion,” she said.

For now, Sylvia is a fifth grader at Buckeye Valley West Elementary School. She and her siblings participate in the Ostrander Merry Shamrocks 4-H Club.

In December, Sylvia purchased an ATV (all terrain vehicle) with a dump bed that enables her to haul hay, feed and other supplies to the animals. With the dump bed, she can also clean stalls, load manure into the bed and take it to the staging area until it is used to fertilize fields. Tractor Supply, the company that sold the ATV, is paying to have it adapted with a hand control so Sylvia can work the gas and brake and basically operate it by herself. Until then, someone else has to go along to help.

Cooperation is one of the many benefits on the family farm. Sylvia sees herself helping the family operation and helping her brother and sister with their projects, and in return, they help her.

Sylvia’s learning about good business and accounting practices as she works with her grant. Part of her grant paid for the ATV and part paid for calves. Her family donates many other aspects, such as land and shelter for the animals. And items such as feed, hay and small supplies can be obtained from the family in conjunction with their current operations.

Sylvia can leverage bulk rates for feed, supplies and veterinary services because of the cooperative nature of her business and the family’s business. Once Sylvia sells her animals, she reimburses her family for expenses; then with remaining profit she purchases additional feeder calves to raise for the following year.

It’s not all easy. Raising, showing, and selling cattle is tremendously hard work. This is not a glamour job. Large animals can have large problems, such as disease or injury. They can kick, step on people, or charge. Not one day can go by without feeding and watering.

If it’s muddy, icy, and cold, these are not fun tasks. Cleaning stalls is the “least fun thing of all,” say all the Wigals. Sylvia also spends significant time grooming and training the calves. She said in her business plan, “This is an integral part of the beef raising process since a good showing during the fair has historically brought higher than average prices for beef. Good grooming and proper feeding is also necessary so that the animal shows as high quality and healthy beef.”

Sylvia is one ambitious, hard-working 11-year old. Way to go, Sylvia!

Project helps people with disabilities become entrepreneurs

The Employment Outcomes Project of the Ohio DD Council helps people with disabilities and their families take control of their employment and business opportunities. The project has two options: Micro Enterprise and Employment Agent. The County Board of MRDD in which the person receives services and the Ohio DD Council provide the funds.

Micro Enterprise

The story you see here about Sylvia Wigal is the result of Micro Enterprise start-up funds. Under this option, teams made up of families, friends and care providers help the person with a disability create a business based on the person’s interests and talents. Start-up costs are limited to $5,000 per year. Ohio DD Council also conducts two-day Micro Enterprise workshops to help individuals explore business ideas and create the foundation for their business plans. The next workshop is scheduled for March 8-9, 2005, in southwest Ohio.

Employment Agent Commissions

Under this option, an employment agent chosen by the person with a disability helps the person find a job. The agent receives a commission from the project that is based on the person’s wages: 50% wages for the first year, 40% for the second year, 30% for the third year, and 20% for each year thereafter. There are no waiting lists, evaluations, or readiness criteria. People with disabilities get jobs like everyone else, through family and friends. The difference is that an agent (who might be the family member or friend) earns commission based on his or her success.

Project outcomes

For more information, visit the Employment Outcomes website: www.mrdd.net, or contact: Robert Morgan, Project Manager, Employment Outcomes, 191 Somerset Rd., Delaware, OH 43015, (740) 272-1658, email: rmorgan@mrdd.netr

“Hiring people with disabilities can help employers tap an enormous market. People with disabilities have a combined income of more than $1.2 trillion in discretionary income. In comparison, the teen market controls $140 billion. Research has shown that a majority of households patronize businesses with people with disabilities in their advertising.” Leslie Wilson, Wilson Resources. Inc.

Touch Tours geared toward art lovers with visual disabilities

Art patron Hank Samuels, Bexley, went on the first “Touch Tour” and thought it was great. “The tour guide is an absolute marvel when it comes to describing pictures,” he said.

During the tour, Samuels who is legally blind due to glaucoma told the guide, “You’re describing it better than I can see it myself.”

As the tour progressed, Samuels donned a pair of nylon curator gloves and felt a sculpture as it was described to him. He also was handed a section of ornate framing similar to some of the frames used at the gallery.

The tour centers around permanent collection art pieces such as works by Claude Monet. At one point, a poem is read to convey the sense of a breeze blowing a tree’s branches as portrayed in Monet’s Sein at Port-Villez.

Small cards with puff paint lines created by studio educator Jessimi Jones, simulate the paintings that are discussed. Visitors with visual impairments feel with their fingers the angles and layout of what is in the art work. At one stop during the tour, another sample card with various textures allows visitors to feel the structure and layers of a collage.

“If you like art and don’t want to be out of the art stream, this is one way to stay in it,” Samuels said.

Planning for Touch Tours began in Spring, 2004, after museum docent Paul Hammock took a class on audio description from Columbus-based Accessible Arts.

Linda Wyman, vice president of Accessible Arts, served as an adviser to the museum as it developed the tour. “We made suggestions, and they listened,” Wyman said.

For instance, Wyman, also legally blind, encouraged docents to give important historical context during the tours—just as they do for other tours.

A docent for two years, Hammock recalled one of his most memorable early traditional tours for a group of young students with multiple disabilities. That experience and the additional training, and exposure to person-first language and individuals with disabilities, helped to drive his participation in the project.

“We read, we researched,” he said, about the efforts to learn what other museums have done to make art more accessible to patrons with disabilities. “We didn’t follow a lot of what has been done at other museums. We went our own way. We want to have our tours a little more personal and tailored to each group,” Hammock said.

“Our docent program is designed to engage visitors in lively conversations about art,” said Barbara Zollinger Sweney, Columbus Museum of Art’s educator for school and docent programs. “We worked really hard to develop different kinds of ideas to convey the art to patrons with disabilities.”

Zollinger Sweney said docents describing the Touch Tour were trained on all aspects of the museum experience. That includes explaining details about each room that is entered. “What it looks like, what’s in it,” she said.

Hammock said the preparations, collaborations and interactions with people with disabilities has sensitized his awareness about their humanity and the need for access to public art.

The one-hour guided tours take place at 2 pm each second and fourth Saturday of the month. Each tour is limited to six adults and costs $3. Reservations are required.

For more information or to make a reservation, call: (614) 629-0359 or visit: www.columbusmuseum.org

Governor appoints chairman and new members to Council

Curt Wellman works at Goodwill Industries, Columbus, in its Senior Additional Growth Experience (SAGE) program. He also is a member of Solidarity of Ohio, which produces a biennial statewide conference for people with disabilities and their advocates, considered the largest conference of its type in the state and possibly in the nation.

He is on the Human Rights Committee for the Columbus Developmental Center, part of the Ohio Department of Mental Retardation and Developmental Disabilities, and he has held responsible positions for other disability-related organizations.

Erica Thomas recently became a stay-at-home mother, leaving a five-year stint as a budget/management analyst for the Ohio Office of Budget and Management. Prior to that, she was a budget/policy analyst for what is now the Legislative Service Commission. She has an M.S. in agriculture and natural resources policy from The Ohio State University (OSU) and a B.S. from OSU in sustainable resource management.

She serves on the Advocacy Committee at Oakstone Academy and belongs to The ARC of Ohio, the Central Ohio Chapter of the Autism Society, Ohio Ecological Food and Farm Association, and the Ohio Environmental Council.

Shelley Papenfuse is a 13-year employee of The Ability Center of Greater Toledo. Before then she was an intake coordinator and did crises counseling at Family Services of Northwest Ohio in Toledo. At The Ability Center, she reviews policies and practices of organizations and helps find ways to remove barriers to community living and community services.

She is certified by the federal Department of Justice and Equal Employment Opportunity Commission to provide training on The Americans with Disabilities Act; and she serves as liaison to the Disability Studies Program at the University of Toledo.

She also serves on the boards of the Toledo Area Regional Transit Authority; City of Toledo, Toledo Housing Fund; Ohio Governor’s Olmstead Taskforce; and City of Toledo’s 2020 Planning Committee. She has studied at Bowling Green State University and the University of Toledo.

Bill Darling is associate director of Assistive Technology of Ohio (AT-OHIO), which creates programs that make it easier for Ohioans with disabilities to get the technology they need to learn, work and live independently. Prior to his current position, Darling had a consulting company, worked in the private sector as a rehabilitation counselor for MEDVOC Management, Inc., and was a social worker at Southeast Community Mental Health Center.

He has a Ph.D. in rehabilitation services from The Ohio State University, an M.S. in rehabilitation counseling from Southern Illinois University, and a bachelor’s degree from Miami University.

Apply for Council membership

• Individuals with a developmental disability,
• Immediate relatives or guardians of adults with mentally impairing disabilities who cannot advocate for themselves, and
• Parents or guardians of children with a developmental disability.

All candidates should have experience serving on committees, boards or organizations concerned with persons with developmental disabilities; first-hand knowledge in the developmental disabilities field; and time to attend monthly meetings and to work on at least two committees.

Serving as a member of Council provides the opportun-ity to get involved and work collaboratively with state policymakers, local provider, consumers and family members to plan activities that will increase and support the independence and, productivity, and community integration of people with developmental disabilities.

Governor Taft will appoint members for 3-year terms beginning November 1, 2005. Applications must be completed and returned to the Council office by May 1, 2005.

To request an application, contact ODDC, (614) 466-5205, (800) 766-7426, (614) 466-0298 fax, or visit: www.ddc.ohio.gov/abt/recruit.htm

Outreach projects awarded $29,000 by Council

Wright-Choice Internship, Columbus, $7,000. Tykiah Wright will create programs to increase employment opportunities in the field of mental retardation and developmental disabilities for students with disabilities at the high school and college level.

Triple Jeopardy II-African American Women with Disabilities, Columbus, $12,000. Cassandra Archie will direct this grant to expand on previous outreach efforts related to African American women with disabilities and building relationships for outreach with Ohio's Urban Leagues.

Centro Esperanza Latina, Columbus, $10,000. Project Director Nora Montalvo-Crumbly will assist families of children with developmental disabilities in the Hispanic community receive qualified care from community agencies.

For more information, contact: Kenneth Latham, ODDC, (614) 644-5546, (800) 766-7426, kenneth.latham@dmr.state.oh.us

Council requests proposals for Funding for Arts

Awards will be from $2,000 to $12,000. Deadline for receipt of applications is July 18, 2005.

For profit and non-profit organizations and individuals in Ohio that are committed to promoting artists with disabilities are encouraged to apply.

Artistic disciplines may include, but are not limited to:

Dance, Video, Writing, Playwriting, Design, Sculpture, Painting, Poetry, Choreography, Jewelry, Photography, Music, Architecture, Web design

Applications will be available after May 1 on DD Council’s website: www.ddc.ohio.gov, or you may request a print copy from leslie.paull@dmr.state.oh.us

New project develops leaders

Forty-six other states, as well as the United Kingdom and other countries, offer Partners in Policymaking. Approximately 13,000 Partners’ graduates help create a national and interna-tional network of community leaders serving on policymaking committees, commissions, and boards. Graduates learn to change their own lives and then work for changes that affect others with disabilities at local, state, and national levels.

The Ability Center of Greater Toledo will begin the project by training people from Lucas, Defiance, Ottawa, Wood, Fulton, Henry, and Williams Counties. The center is a nonprofit center for independent living with a mission to help people with disabilities live, work, and socialize in the community. The center’s advocacy director, Sue Hetrick, who also is a parent of a son with developmental disabilities, heads the training project. Assisting her in coordinating the program is Kay Bennett, executive director of the Arc of Lucas County.

During the first year of the project, twenty participants will be trained. Half will be individuals with developmental disabilities and half will be parents or other family members.

For more information, contact: Sue Hetrick, The Ability Center, 5605 Monroe St., Sylvania, OH 43560, (866) 885-5733, (419), 885-5733 v, (419) 882-2387 tty, (419) 882-4813 fax, shetrick@abilitycenter.org

DD Council collaborates with “sister” agencies

The DD Act funds three programs in each state: a Developmental Disabilities Council, a Protection and Advocacy (P&A) Agency and University Centers for Excellence in Developmental Disabilities Education, Research and Service.

Ohio’s P&A Agency is Ohio Legal Rights Service, which has participated in the newsletter for more than two years.

Beginning with this issue, Nisonger Center at The Ohio State University will include information about their programs.

The DD Act set up State Councils on Developmental Disabilities in each state to engage in advocacy, capacity building, and systemic change activities. University Centers for Excellence were created and are funded to provide interdisciplinary pre-service preparation and continuing education of students and fellows, to provide community services, to conduct basic or applied research, evaluation and the analysis of public policy, and to disseminate information to help the field. P&A systems are charged with protecting the legal and human rights of individuals with developmental disabilities within the state.

The federal Administration on Developmental Disabilities that oversees all three programs, encourages and promotes collaborative activities among the three “sister” programs. Council is pleased to make DD Quarterly a collaborative effort in Ohio.

See pages 11-15.

News from Ohio Legal Rights Service (OLRS)

Ohio Legal Rights Service

www.olrs.ohio.gov
http://olrs.ohio.gov

Martin v Taft Update

In June of 2004, a settlement was reached between the plaintiff class and the state defendants. Among other things, the settlement and proposed consent order would have supported a restructuring of Medicaid funding for people in ICFs/MR to ensure that they could choose their provider and whether to be served in a facility/institution or in a community based program. Needed services would be funded in either setting.

The court scheduled a fair-ness hearing for September to review the settlement, but then cancelled it when the guardians of residents of some ICFs/MR in Ohio, along with and in some cases supported by interest groups representing long term care providers, objected to the settlement. Some objectors had been told that the settlement would eliminate facility-based services in Ohio, and many mistakenly thought that their wards would have to move from the facility.

The parties to the settlement offered points of clarification that addressed these objections, including agreement that facility residents could choose to remain in their facility and receive payment under the new funding scheme. The clarification also specified that the new funding scheme would use the same amount of dollars as the current ICF/MR program. Approximately one billion federal and state dollars were paid to ICF/MR providers in FY 2003.

Various legal arguments for and against the settlement were filed with the court. Some objectors filed motions to decertify the class, and OLRS attorneys responded with legal arguments why the class should remain certified.

Most recently, the judge issued a notice that he intends to appoint a special master to make recommendations on the various motions. The master would engage the parties (and perhaps the objectors) in “intensive settlement negotiations.” The parties and several of the objector groups opposed the notion of the master as an additional expense that was unnecessary.

Although initially they supported the settlement and opposed class decertification, in a filing with the court in late December the state defendants announced that they had reconsidered their position and now supported decertification of the class. Although they had agreed to a remedy that requires legislative approval, the state defendants argued that the court should now avoid such a remedy and let them proceed without court supervision. They acknowledge that this would have the effect of nullifying the class settlement, but state that the individual plaintiffs could then negotiate individual settlements.

In response, the plaintiffs and plaintiff class now have asked the court to void the settlement and to set the case for trial. Plaintiffs noted that the objections are moot because the settlement, with its proposed changes for the ICF/MR funding stream, has been removed from consideration. Additionally, the court can consider the interests of the ICF/MR residents in fashioning its order should the plaintiffs prevail at trial.

In responding to the defendants’ argument that Martin is a “tired law suit,” plaintiffs offered evidence that around 10,000 Ohio citizens with MR/DD still reside in Medicaid funded institutions and cannot leave those facilities because the funding pays for the bed, rather than being paid to the person. The plaintiffs also demonstrated to the court that the state’s own documents show that of 4500 new waivers that have come online as of October of 2004, only 58 have been used to move someone from an institution.

Although the case is old, Ohio’s over reliance on institutional residential services persists. Now it appears that only a trial and court order will result in enforcement of the community integration mandate of the ADA and meaningful choice for the plaintiff class.

2004 in review: doing more with less

Examples of OLRS cases, policy and collaborative work follow.

Advocating for people who are deaf and in state hospitals

A Major Unusual Incident (MUI) alleged sexual assault on a client who is deaf and in a state facility. OLRS found the client sleeping on a mat on the floor, subdued by multiple medications, and without interpreter services. OLRS negotiated transfer to another facility with adequate interpreter services and eventually won discharge to the community. OLRS monitored the state sexual assault investigation.

Nursing home placement investigations

OLRS found placement in locked units without information about PASSR process or rights, a thirty-day convalescence rule allowing admission from hospitals without PASSR review, limited housing in the community, and insufficient mental health system funding to address nursing home placements. OLRS concluded that continued individual advocacy is necessary in some cases and litigation may be required in other cases.

Toward discharge to the community

Discharge to the community achieved

Right to freedom from abuse

The facility’s MUI report omitted duration of restraint, use of medications, type of incident and other data. OLRS conducted an abuse investigation, secured transfer to another facility, and coordinated an on-site meeting with administrators. OLRS learned that ODMH was unaware of the initial and two subsequent MUI reports. OLRS continues to negotiate with ODMH and the facility for improved policies, procedures, reporting and monitoring.

Right to special education

The Ohio Department of Education (ODE) invited OLRS to advise the ODE-OCECD Mediation Stakeholder group on the mediation process as required under IDEA. As a result of the group’s work, ODE changed from using its employees to using outside contractors as mediators between the school and parents in the mediation process.

From service failure to accommodations and sustained employment

A woman required a motorized wheelchair and vehicle modifications to secure and keep employment. She applied to the Bureau of Vocational Rehab-ilitation (BVR) for services, but BVR failed to respond in a timely manner and placed her on a waiting list. OLRS’ CAP obtained prompt access to services. BVR then closed the case without written notice.

CAP again intervened and secured reopening with assignment to a new counselor. The client has obtained a motorized wheelchair and vehicle modifications that allow her to maintain her current employment.

Curriculum software goes home

Challenging discrimination in public services

Challenging discrimination in employment

OLRS counseled the client about her rights and options including law suit and civil rights complaints, reviewed personnel records, presented the employer a demand letter, and negotiated a settlement agreement. The client was reinstated, was able to apply to continue on disability leave, and at five years’ service will be eligible for disability retirement.

Preparations for 2004 election

OLRS closely monitored developments in election laws at all government levels, posted “alerts” of each development on the agency web site, prepared for participation in the national Election Protection campaign, operated its own voters’ hotline as the election approached, and updated and disseminated its voter rights publication.

Transit system coming Into compliance

Collaborating for housing

Late in 2004, OLRS collaborated with Coalition on Housing and Homelessness in Ohio (COHHIO) to improve housing and access for people with disabilities who are homeless.

Mental Health Self-Advocacy Guides Available

• Advocacy: The Act of Supporting and Promoting Rights and Recovery
• Advocacy: Let’s Get Started

The guides include practical information about how an individual can have an impact on the mental health system. These advocacy guides are available in print from OLRS and on the agency website: http://olrs.ohio.gov/asp/olrs_PAIMILeadTrainInst.asp.

News from Nisonger Center

Nisonger Center targets three new projects

The Nisonger Center
The Ohio State University
323 McCambell Hall
1581 Dodd Drive
Columbus OH 43210

Phone: (614) 688-8472
Fax: (614) 247-6073
rabidoux.1@osu.edu

The Nisonger Center Advisory Committee met on December 15, 2004. Dr. Steven Reiss, Professor of Psychology and Psychiatry, and Nisonger Center Director, told the committee that the state of the Center is excellent. Total revenues have risen to an annual rate of $5.4 million and are diversified by federal, state-county, fee income, and private industry sources.

The largest program is dual diagnosis, which operates an outpatient clinic and has an National Institute of Health (NIH) funded research center on medications. Professor Michael Aman and Eugene Arnold, M.D., head this research unit. In 2004 Nisonger Center participated in a statewide program of excellence in dual diagnosis and sponsored a NADD Ohio conference on dual diagnosis; in 2005, Dr. Betsey Benson will provide statewide technical assistance and training.

The second largest program is educational services, where Dr. Margo Izzo has been awarded significant federal funding for transition services. Dr. Tom Fish’s annual “sibling conference” is part of the Nisonger’s Education Services.

The Nisonger Dental Program will serve about 3,500 consumers in 2005. Pediatrics now accounts for less than ten percent of the Center, an historical low, but Professor Reiss said that this program is expected to grow later in 2005.

Daniel Coury, M.D., a Professor of Pediatrics, is Nisonger Center’s new medical director, and he is strengthening ties with Children’s Hospital and recruiting a Nisonger pediatrician. Nisonger’s national award-winning rural clinics are part of its Pediatric program. With growth in psychiatric participation, notably Yasser Ramadan, M.D. and John Johnson, M.D., total physician participation in Nisonger is the highest it has been since the 1970s.

In 2004 the Franklin County Board of Mental Retardation and Developmental Disabilities recognized Nisonger Center as a “community star.”

In 2004 Nisonger Center benefited from significant media and public interest in the results of its research. Recent feature articles on Nisonger Center research have appeared in the Washington Post weekly science page, Health magazine, and Exceptional Parent magazine. The Center’s bragging points include a host of national research and student awards. In 2003, for example, Nisonger faculty “swept” the two major mental retardation research awards in the nation.

Dr. David Hammer presented Nisonger Center’s plans to address the national discrimination against people with developmental disabilities regarding life-saving solid organ transplantation operations. In 2004 Nisonger Center participated in a national coalition of professionals, advocates, hospital accreditation groups, medical societies, and national mental retardation family and professional societies.

Nisonger Center will operate a national family hotline, conduct training programs for professionals who control access to organ transplantation, and conduct research to generate hard facts regarding the extent of discrimination and the success of the operations. The Center will use its world-renown medication researchers and applied researchers to develop models for training people with mental retardation to take post-transplant immunosuppressant medications.

Too much of the behavior of people with mental retardation is attributed to their IQs and not enough to their other human qualities, according to research recently published by Steven and Maggi Reiss. New research shows, for example, curiosity in the context of mental retardation. People with mental retardation have intellectual needs just like everybody else. Some are very curious regardless of “IQ”.

Nisonger Center’s Dr. Tom Fish, a former recipient of the prestigious Mary Switzer national fellowship from NIDRR, has started book clubs for people with mental retardation. Privately funded by generous gifts from the Columbus Foundation and the Fish Family Foundation, Dr. Fish’s clubs are the first significant effort to address the intellectual needs of people with mental retardation. The clubs are real “turn-ons” for consumers, who look forward to them. They are held in typical settings, such as Border’s and Barnes and Noble’s. Dr. Fish plans to continue expanding the clubs.

Noting the recent adoption of a Disabilities Studies minor at OSU, Professor Steven Reiss asked the committee what should be next on the agenda. Professor Susan Huntington, OSU graduate school dean, was in attendance and for the first time publicly expressed interest in Disabilities Studies graduate programs. OSU seeks to maintain and even accelerate its national leadership regarding Disabilities Studies.

The advisors and faculty of Nisonger Center look forward to 2005 and the exciting opportunities it will bring to serve people with disabilities.

Fourth Annual SIBS Conference brings together adult siblings, provides support

About 120 siblings from throughout Ohio and beyond its borders attended the Fourth Annual Ohio Adult Siblings Conference, November 5-6, 2004 in Columbus at the Airport Marriot.

Some came with their brother or sister, to learn about topics such as:

• Taking Care of the Caregiver;
• Supporting Your Sibs’ Independence;
• Local Support & Action Groups;
• Guardianship and Life Planning;
• Approaching Parents;
• Understanding Case Management and Service Coordination;
• Medicaid; and more.

The conference was the first of its kind nationally, and has been replicated in Illinois as a support for siblings of adults with mental retardation and developmental disabilities (MRDD).

“Entering its fifth year, the conference is designed to provide information, guidance, and support for adult brothers and sisters of people with disabilities,” said Tom Fish, director of Family and Employment Services at the Ohio State University’s Nisonger Center. “For me, the conference is dream come true and represents a place where people can come together to share and relate to common experiences and feelings.”

The two-day event featured break out sessions and keynote guest speakers such as Doreen Croser, Executive Director of the American Association on Mental Retardation (AAMR), Marca Bristo, president of Access Living in Chicago, and Cheryl Phipps, Superintendent of Hamilton County Board of MRDD.

“You had caregivers in the audience who never thought about themselves as playing a role in the life of their brother or sister,” said Joyce Clemons, of the Ohio Department of MRDD, and herself the sibling to two brothers with disabilities. “It’s huge for these siblings to hear it.”

Two siblings who answered the inner call to come to the aid of their brother are Windham, Ohio twins Noreen Siegner, and Maureen Brawn, age 41, who stepped up to the plate in a big way for Kevin, age 44, who has seizures and brain injury. For the most part, Kevin is nonverbal but has developed his own vocabulary to express wants and needs.

Siegner and Brawn’s 81-year-old mother had been diagnosed with a form of dementia and steadily began to make decisions that proved to be too confining for Kevin. Other demands she made about his care alarmed the women, who also had to deal with six other older brothers and sisters who believed that nothing was the matter.

“He was only allowed to stay in one room in the house, and that was it,” said Brawn.

The two took their mother to Portage County Probate Court, and asked that the guardianship she held for her son be revoked. A compromise was met, with Kevin’s mother retaining estate and finances guardianship, and Noreen becoming his legal guardian for his health and well-being.

“It was a hard thing to do, probably the hardest thing we ever had to do,” Siegner said. “But we had to help our brother.”

The dispute has caused a rift in the family, but the women are glad for one thing: they helped Kevin. “It gave him some freedoms and choices,” Brawn said. “If he wants to go on a field trip, he can.” He enjoys going to car lots and admiring the automobiles. “Now he can do that, too,” she added.

Caregiving for one’s sibling with disabilities does not fall just to the women in the family. Brothers also take an interest in caring for siblings.

David Benis, of Columbus, has attended all four SIBS conferences. His brother, Joel, 32, has cerebral palsy, epilepsy and mental retardation. When Joel was diagnosed at six months, his parents were told he would never walk, talk, or enjoy life.

“My parents refused to give up on him,” Benis said. “Today, Joel lives in Creative Housing and he is an employee of ARC Industries. He participates year-round in Special Olympics. He is quite good at track.”

Benis returns to the conference for several reasons, he said.

He’s become more involved in “behind the scenes” activities such as the planning that helps produce the event. And now, he’s working on securing funds to support next year’s conference.

“I believe that as our parents, or our sibling's caregivers get older, we must step up to take over when the time comes. The conference give us the tools to at least know what questions to ask to provide care for our siblings.”

“These conferences have opened the door of communication between my parents and me,” Benis said. For instance, a workshop on Medicaid Waivers prompted him to ask about Joel and waivers. He learned that Joel, indeed had a waiver.

“The conference is a place where I can talk to people who understand me and what my life has been like with a sibling who has MRDD,” he said.

“We all have our own stories, but deep down inside, they are all the same.”

Benis noted the 2004 conference had a slightly new angle as well—more spouses attended than in previous years, completing an important circle in the care of a family member.

For more information about the Ohio Adult SIBS Conference, visit: www.ohiosibs.org; e-mail: fish.1@osu.edu; call (614) 292-7550 voice; or fax (614) 292-3727

SIBS Conference participants initiate support group

Sisters Noreen Siegner and Maureen Brawn started a support group in Portage County for Adult Siblings of people with MRDD. Six people attended the first meeting in January.

The group meets the second Monday of the month at 7 pm. For more information, contact Siegner at (330) 442-1643.

Presentation points out importance of self-determination

Cheryl Phipps, superintendent of Hamilton County’s Board of MRDD, presented at the Fourth Annual Ohio SIBS Conference. Her topic, “Building Responsive Adult MRDD Services—What We Can Do Together,” conveyed the need and importance of self-determination and the team approach of listening to consumer’s preferences.

“It’s what’s important to them (the consumers) and not what’s important to the system,” Phipps said in a phone interview.

“Sometimes,” she said, “we professionals write and speak in a language nobody can understand. So she’s asked a little more from consumers in Hamilton County, she explained. “We ask the self-advocates to help us put it (various communications regarding consumer services) into words everybody understands.”

For instance, Phipps, who has worked in the MRDD field for 30 years, asked local consumers what “self-determination” meant to them. “They said, ‘It means I have the power and control over my own life,’” she said.

To illustrate that fact, Phipps talked about Susie, a consumer who has cerebral palsy and who takes part in activities at the Hamilton County Support Center. She wanted to leave the sheltered workshop environment and try something different. Phipps said they identified a job where some computer work needed to be done, so Susie tried it. “And now she works there…and they said it couldn’t be done,”

Phipps said that due to organizations such as MRDD operating with boards, “we all need people to keep reminding us why we’re here.”

She said consumers and their families should always be able to say to the professionals, ‘your job is to work with us.’

“I’m such a proponent of self advocates and family members’ involvement in the process,” she said. “If we can help them get strong enough, then they can make sure that the system stays honest.”

Her presentation also compared and contrasted traditional approaches to case management and an approach based on independence and choice.

“The way our systems are set up now, they (consumers) fit into programs,” Phipps said. “But for the future we design around them. People with disabilities are able to decide what services they want.”

She said professionals in the MRDD field who do not make a shift in attitude and practice today toward self-determination cannot expect anything to change for the better tomorrow.

ODMRDD and ODJFS develop vision

Ritchey suggests that issues previously contentious between agencies that have blocked progress in achieving the Medicaid redesign promises contained in House Bills 94/405 are addressed in the plan called, “Vision for Medicaid Services for the MR/DD System. The plan has been forwarded to the federal Centers for Medicare and Medicaid Services (CMS) for approval. Ritchey hopes this plan will become a “blueprint for major systems change in Ohio.”

The proposed vision aims to meet “the growing needs of Ohio’s citizens with disabilities through increased use of the Medicaid home and community based waiver program, by restructuring the current service delivery system and by maximizing system resources.” The goal is to increase the number of waivers available to more people.

The plan uses words like “flexible”, “predictable”, “fiscally responsible”, and “responsive to needs”; and names six priorities:

1. Resolve Delegation of Authority Issues: the role of County Boards of MR/DD and their administrative authority became muddied in the redesign process as agency turf tensions ensued. The plan is intended to assure that maximum dollars are generated to increase the number of people served.
2. Conversion of the Residential Facilities Waivers (RFW): the goal is to convert RFW’s to Individual Options (IO) Waivers which are more flexible and are portable, providing people with more choices.
3. New Waiver Reimbursement System: the reason for a statewide waiver system is to make resources more consistent, reliable and predictable, so that people can obtain services and supports they need when they need them; and to adjust them as needs and situations change over time.
4. Community Alternative Funding System (CAFS) Changes: federal funds have been essential to provide the services and supports people need, and to maintain them Ohio has had to make major changes. Work has begun to replace the CAFS program with more federally compliant funding resources, while maintaining the supports people need.
5. Targeted Case Management (TCM) Changes: Service coordination would end as a separate service under the plan, so that the provider pool would be limited to county boards of MR/DD, who would also serve those currently receiving services other providers.
6. Approval of the Community Access Model Waiver (CAM): The CAM is designed for residents in developmental centers who chose to move to a community residence.

Director Richey’s letter goes on to remind stakeholders that existing budget constraints have not only caused major cutbacks over the last several years, but will continue to block the department from accessing additional state dollars to support the service system. So the plan is attempting to restructure and maximize current resources to meet the need of over 68,000 people.

Ritchey is asking stakeholders to be ready for “critical timelines” that would need to be confronted, if CMS approves the plan. He affirmed that his chief goal is to “carry out this vision seamlessly and without interrupting services to people with disabilities.”

To view the complete Vision for Medicaid Services, visit: http://odmrdd.state.oh.us/Includes/Press_Releases/Publications_ Reports.htm

Register today!

Getting to Win-Win

Friday, April 8
9:30 am–2 pm
Broadview Heights, OH

Keynote:
Bobby Silverstein, Director,
Center for the Study and Advancement of Disability Policy,
Washington, DC

• Best practices in negotiating skills development
• Tips in working on disability issues collaboratively
• Using emerging disability policy to navigate the issues

Reservations required.
$15 includes lunch and materials. Contact Terri McIntee, (440) 885-2685, Terri.McIntee@LNOCA.org

Registration booklets now available!

SOLIDARITY ‘05

Ohio’s largest conference planned by and for people with disabilities

May 11-13, 2005
Hyatt Regency Hotel
Columbus, OH

To request a booklet, or to ask about stipends, contact: The Meeting Connection, (877) 235-6079, lokendtmc@cs.com

SOLIDARITY is a project of the Disability Network of Ohio–Solidarity, Ohio Developmental Disabilities Council, Ohio Department of MRDD, Ohio Rehabilitation Services Commission, and many other sponsors.

Ohio Autism Taskforce issues recommendations

Representative Jon Peterson
2nd Ohio House District

After one year of deliberations, the Ohio Autism Taskforce (OAT) has completed its work. At this website you will find 43 administrative and legislative recommendations which will be forwarded to Governor Taft, Speaker of the House of Representatives Jon Husted, and Senator Bill Harris, President of the Senate.

The recommendations are the direct result of months of OAT hearings, committee meetings, conversations, and 8 public regional forums. We have attempted, to the best of our ability, to maximize input from individuals with autism, parents, educators, providers, policy makers and others concerned about the quantity and quality of services provided to individuals with autism in Ohio.

This website represents a final opportunity to be heard on this important issue before the OAT final report is released. After reviewing the recommendations, please send your comments by email to Representative Jon Peterson’s office at district02@ohr.state.oh.us or by writing to Representative Jon Peterson 77 South High Street, Columbus, Ohio, 43215.

Warmest regards,

Jon Peterson, Chair
Ohio Autism Taskforce

To view the recommendations, visit: www.ohioautismlegislation.org

Send email comments to: district02@ohr.state.oh.us

WrightChoice Intern Program recruits students

The mission of WrightChoice is to “build a bridge between resources and opportunities for minority students and students with disabilities.” (See DD Quarterly, Fall 2004.) The program recently launched its new website giving an overview of the program and launching its 2005 recruitment season. Visit: www.wrightchoice.org

Resources & Announcements

Healthy Transitions: Health Promotion and Transition Services for Adolescents and Adults with Developmental Disabilities

April 8-9, 2005
Cincinnati Children’s Hospital
Medical Center, Sabin Education Center

Collaborative symposium featuring regional and national experts on the health care transition of adolescents with developmental disabilities (day one) and the health promotion of adults with developmental disabilities (day two).

Course will feature three tracks, designed to meet the specific needs of:

• Health care professionals
• Community and vocational professionals
• Families and self-advocates

For additional information, or to register, contact: Continuing Medical Education at Cincinnati Children’s, (513) 636-6732, or e-mail: kimberly.collins@cchmc.org

DD Council Forums gather public input

The Ohio DD Council will be holding public forums to gather public input for developing the next five year State Plan for Developmental Disabilities. The first two scheduled forums will be:

• May 11, 4:30 pm at the SOLIDARITY Conference, Hyatt Regency Hotel, Columbus.
• May 19, 2 pm at the People First of Ohio Annual Meeting at the Convention Center, Hyatt Regency, Columbus.

DD Council forums will provide an opportunity for participants to give input about gaps, barriers and needs that they would like to see addressed in Council's 2007–2011 State Plan.

Additional forums will be scheduled throughout Ohio. For dates and locations, contact: DD Council, (800) 766-7426), or visit: www.ddc.ohio.gov

Transition Planning Weekend Retreat

Transition planning weekend retreats are being provided for youth transitioning from school to work and their families.

• Explore family’s expectations and student’s goals
• Determine student's skills and vocational interests
• Develop a transition plan that connects students with rehabilitation and MRDD programs to help guide the IEP
• Provide students the opportunity to gain work experience and use their feedback to guide the transition plan
• Identify contacts for community resources and support people; define the roles these agencies will take in assisting the student transition from school to work
• Provide families the opportunity to interact with other families

May 21-22, Columbus, 3 pm Friday–4 pm Saturday

To be eligible, students must: have mental retardation or developmental disabilities; expect to complete school in the next two years; and expect to be employed after school. Families who bring representatives from their son or daughter’s transition team will be given priority in the selection process.

For more information, contact: Jennifer Aaron, (614) 888-5892, aaron.17@osu.edu

Third National Conference on Mental Illness and the Justice System

May 12, 2005 - Greater Columbus Convention Center

Workshops will include: Medical Information, Mental Health Court Rewards & Sanctions, Attorney Ethical Issues, Service Issues, Grants & Funding, MRDD Issues in the Court Setting.

Participants should include judges, prosecutors, public defenders, law enforcement, social workers, mental health treatment professionals, and consumer advocacy groups.

For conference brochure, e-mail: jpoprocki@law.capital.edu

Demystifying the Interplay of the ADA with FMLA and Workers’ Compensation

A pre-conference option for the Multiple Perspectives Conference

April 11, 2005
12:30–4:30 pm
The Blackwell Inn at The Ohio State University

Attorneys from EEOC, private practice, and Workers’ Compen-sation will help participants understand how the ADA, FMLA, and Workers’ Compensation complement each other and how to assure the requirements are met. Includes panel discussion and practical problems drawn from participants.

A wine and cheese reception will follow, 4:45–6 pm.

Cost: $150 ($125 before March 1) Approved for 3.25 PHR and SPHR credits; 3.0 credit hours for CLE.

To register, or for more information, contact: ADA-OHIO, (800) 232-6446, (800) 232-2321 tty, adaohio@aol.com

The Coalition on Homelessness and Housing in Ohio (COHHIO) presents its annual conference...

Housing Ohio 2005

April 4-5, 2005, Hyatt on Capitol Square, Columbus

2005 MRDD Month Celebration

A statewide celebration honoring MRDD Awareness Month 2005 will be held at the Greater Columbus Convention Center

Friday, March 18 10:45 am–4 pm

“Advocacy at Its Best” is the theme for the day-long event that will include inspirational and practical advice from self advocates. People First will host a Friday-evening dance from 7–11 pm.

The celebration will coincide with the Annual Meeting of People First of Ohio that will be held Saturday, March 19 from 10 am–1:30 pm at the Convention Center.

For more information, please call (888) 959-8838 or (740) 397-6100.

Sponsors: The Arc of Ohio, People First of Ohio, and OPI.

Whose IDEA Is This? Resource Guide for Parents

IDEA is the Individuals with Disabilities Education Act, a federal law that assures children with disabilities a free appropriate public education in the least restrictive environment.

Congress reauthorized IDEA in November 2004 and the President signed the new bill into law in December 2004. It will become effective July 1, 2005. An important part of this law supports parent participation in their children’s education.

This resource guide for parents includes your rights under special education law and sources for you to contact for assistance.

It explains the steps to getting services and gives answers to frequently asked questions including: consent, evaluation, IEPs, transition, due process, resolving disagreements and discipline.

For more information contact your local Special Education Regional Resource Center, or download the document at: www.ode.state.oh.us/ exceptional_children/Children_ with_Disabilities/

The Health Promotion Resource Guide: Promoting the Health and Wellness of People with Disabilities

This guide is designed to in-crease inclusion of people with disabilities in health promotion initiatives; provides health educators, service providers and program planners a collection of resources for accessibility, communication, and topic specific health promotion.

It emphasizes that unless issues of accessibility (environmental and communication) are addressed, even highly motivated individuals with disabilities may be unable to fully benefit from health promotion opportunities.

98pp. On the Internet: www.fpg.unc.edu/~ncodh/pubs.htm For alternate formats contact: North Carolina Office on Disability and Health, Campus Box 8185, UNC-CH, Chapel Hill, NC 27599-8185; www.fpg.unc.edu/~ncodh

Taking Action: A Step by Step, Self-Help Guide to Becoming a Self-Advocate & Making a Difference

The process of self-advocacy involves research, outreach, follow up, and most importantly, dedication. Booklet focuses on solving instances of discrimination under the Americans with Disabilities Act (ADA) and the Fair Housing Amendments Act.

Includes: quotes from individuals on self-advocacy, five steps of self-advocacy, complaints & applicable laws, sampling of access related complaints, sample letters, tips on what happens if nothing happens.

32pp. Single copies free or download from website. United Spinal Association, 75-20 Astoria Blvd., Jackson Heights, NY 11370-1177. (800) 444-0120; www.unitedspinal.org

Other booklets available:

• Understanding the ADA - English and Spanish versions
• Access State & Local Government: Your rights and responsibilities under Title II of the ADA - English and Spanish versions
• Understanding the Fair Housing Amendments Act – English

Save the date! June 1-3, 2005

Pathways to Employment

Statewide conference sponsored by CMS, ODJFS and the Ohio Olmstead Task Force (OOTF)

Plenary sessions and workshops covering comprehensive information about community-based work for people with disabilities. Cost: $125. Stipends available. CEUs pending.

For more information, contact: AXIS, (800) 231-2947 v/tty,axiscenter@aol.com

Get up and Fly: Passion Works Music

Conversations between college students and adults with disabilities became poems, and with the collaboration of area musicians, the poems became song. With ad-ditional support from the community, the result is this enhanced CD of 12 songs, video, photographs of artwork, and portraits of the artists.

Tracks include: Sarina’s Dream, People at the Park, One Wish, Fun, Times Change, Birds in Triplicate and Yes I Was. Note: Poem titles represent one work of each poet on the album.

Passion Works Studio supports collaborations between artists with and without developmental disabilities in Athens, Ohio. Founded in 1998, with support from the Ohio Arts Council, the studio has dedicated itself to the creation of fine art. All profit is dedicated to the continuation of arts programming and developing employment in the arts for people with and without developmental disabilities.

Contact Art Director Patty Mitchell at (740) 592-6659 to learn how this collaboration was developed.

$10 plus $.0725 sales tax and $6.75 S&H. Passion Works Studio, 21 S. Campbell St., Athens, OH 45701; (800) 784-9843 x212; www.passionworks.org

The Girls’ Guide to AD/HD: Don’t Lose This Book!

This book is written for teenage girls with Attention-Deficit/Hyper-activity Disorder. It offers information, advice and encouragement for living life to the fullest with AD/HD.

Interactive quizzes, helpful tips, fun facts and commentary by three different girl characters with unique personalities and combination of AD/HD traits keep the book lighthearted while addressing the serious issues that AD/HD can present. The guide covers:

• What AD/HD is like for girls
• How the brain with AD/HD works
• How adolescence impacts symptoms
• How counseling, coaching, and medications help
• How to deal with emotions from anger to anxiety to depression
• What advantages there are to having AD/HD
• How to cope with school and homework
• How to get along with family and friends

175 pp. $17.95 plus S&H. Wood-bine House, 6510 Bells Mill Rd., Bethesda, MD 20817; (800) 843-7323; www.woodbinehouse.com

The Autism Encyclopedia: 500+ entries for parents and professionals

A comprehensive guide to the wide range of terminology related to autism spectrum and pervasive developmental disorders.

Synonyms and relevant cross-references are included for the terms and two appendices describe assessment tools and curricula and list autism-related study centers and organizations.

More than 100 autism experts have contributed terms from various disciplines - including pediatrics, behavior analysis, speech-language pathology, occupational therapy, psychiatry, education, psychology and physical therapy - to bring professionals and parents reliable information.

Includes information on: classification systems, diagnosis, screening and assessment, causes, interventions, assistive technology, behavior, medical issues, daily living, legislation, and research.

256 pp. $29.95 plus $5 S&H. Brookes Publishing Co, Inc., PO Box 10624, Baltimore, MD 21285-0624; (800) 638-3775; www.brookespublishing.com

Kids on Wheels

Kids’ Volume: A Young Person’s Guide to Wheelchair Lifestyle

Adult Volume: A Guide to Wheelchair Lifestyle for Parents, Teachers & Professionals

This two-volume set is about kids on wheels living a full life. A life full of fun, friends, family, animals and nature, a life full of sports, art, learning and success, a life full of choices.

It does something radical: It speaks directly to kids. This is because the writers and editors believe children with disabilities should be treated with the respect that allows them to make as many of their own choices as possible and move toward independence just as their peers do.

The Kids’ Volume strives to plant seeds of independent living, disability pride and the “dignity of risk.” And perhaps most importantly, it encourages kids to envision a future of infinite possibilities. Kids will get a look at the diverse experiences of kids with disabilities, learn about their rights under the ADA, and meet some high profile wheelchair users who can be seen as role models.

The Adult Volume encourages parents, teachers and other concerned adults to envision a similarly vital future. It also provides support for parents facing tasks that are often difficult, stressful and exhausting. It contains valuable resources on health, insurance, personal assistance, legal rights, education, transportation and travel.

Both volumes are powerfully written and complemented by positive images and illustrations. Take a more in depth look on the Internet at: www.kidsonwheels.us

150 pp. in each volume. Sold only as a set. Cost $24.95 plus $3 S&H. New Mobility, PO Box 220, Horsham, PA 19044; (888) 850-0344 x209; www.newmobility.com

Mention of any product, service or event in the DD Quarterly does not constitute endorsement by ODDC, ODMRDD, or the AXIS Center.

All resources listed in DD Quarterly are available from the AXIS library. To borrow a resource at no charge, call: (800) 231-2947 v/tty or e-mail: axiscenter@aol.com

Register today to attend this FREE event!

Ohio DD Council, Disability Policy Coalition, and Ohio Olmstead Task Force are sponsoring...

2005 Budget Strategy Training & Legislative Visits

Thursday, March 10. 2005
9:30 am – 3 pm (lunch will be provided)
Hyatt on Capitol Square
75 E. State Street
Columbus, OH 43215

Join advocates from across Ohio as we learn:

• Legislative strategies that will support people with disabilities to live and work in the community
• Important facts about how the Governor’s proposed budget will affect our lives.
• Tips for making effective visits with legislators.

Registration is required. To register, please contact: AXIS, (800) 231-2947 v/tty, (614) 267-4550 fax, axiscenter@aol.com

Sponsors are assisting people with disabilities and family members to attend by offering funds for accommodations such as mileage or attendant care. Please request accommodations by contacting OOTF, (800) 566-7788, (614) 861-0392 fax, bcurtiss@ohiosilc.org

DD Quarterly is produced by AXIS Center for Public Awareness.

DD Quarterly can be viewed at www.ddc.ohio.gov or can be requested from AXIS in large print or on audiocassette.

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

Toll free in Ohio, v/tty:
(800) 231-2947

In central Ohio, v/tty:
(614) 262-8124

Fax:
(614) 267-4550

E-mail:
axiscenter@aol.com

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

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