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In this issue:

About the DD Quarterly

Copyright © 2008, Content may be reprinted upon request.

ODDC Executive Director Zwyer Announces Retirement

David Zwyer recently announced his retirement as ODDC's executive director. Zwyer will retire in September 2008, after leading the agency for nearly 12 years. He has, during his tenure at ODDC, developed a national reputation and significantly influenced disability policy in the state of Ohio. Ron Kozlowski, executive director of Advocacy & Protection Services, Inc. said, "Dave has consistently demonstrated his advocacy on behalf of people with disabilities and their families. He has been a resource and leader in the field in his various roles and we owe him a debt of gratitude for his contribution in the legal, public policy, and self-determination arenas."

Strengthening the Voices of Individuals with Disabilities

Zwyer has worked to assure that individuals with developmental disabilities have a voice in the decisions that affect them. He has championed the causes of individuals by advocating for Ohio's Bill of Rights and was instrumental in establishing programs and supporting legislation to protect people with disabilities from abuse and neglect, supplemental services trusts, and guardianship issues. His leadership has helped people with disabilities gain a stronger voice in policymaking. According to John Hannah, former president of People First of Ohio, "Director Zwyer has been very helpful with getting People First involved with the legislature of Ohio."

Bringing the voice of Ohioans into the national disability advocacy arena was also important to Zwyer. He successfully advocated for the appointment of an ODDC member who has a disability and is a minority on the board of directors of the National Association of Councils on Developmental Disabilities (NACDD). "There's nobody more thoughtful and fair than David. He gives everyone an opportunity to participate," said Becky Harker, president of the NACDD and executive director of the Iowa DD Council.

Achievements

Zwyer was at the forefront of identifying issues important to people with developmental disabilities. He strengthened ODDC's public policy efforts by employing knowledgeable staff. The public policy unit, under his direction, addressed issues involving the professionalism of direct support staff, the needs of offenders with mental retardation, the needs of individuals with a dual diagnosis, waiting lists, and many other initiatives.

Realizing the diversity of Ohio's culture prompted Zwyer to develop an aggressive and comprehensive outreach plan for unserved and underserved populations. Outreach became an ODDC priority and with his leadership, ODDC's outreach policies and practices are recognized as a national model.

Zwyer, who is a lawyer, also saw the need to educate the legal profession about disability-related topics. While serving as chair of the Disability Law Committee of the Ohio State Bar Association, Zwyer co-edited a book for the legal community on special needs trusts.

Zwyer also wrote booklets to inform people about estate planning and guardianship. Peggy Martin, family advocate for the Ohio Department of Mental Retardation and Developmental Disabilities (MRDD) said, "Dave Zwyer is a household name when it comes to estate planning and guardianship issues. Families depend upon his knowledge, and as an advocate in the field of MRDD, I have as well."

On the national level, Zwyer and Elsie Helsel, former ODDC member and chair, were influential in adding language to the Developmental Disabilities Act to address the needs of people with developmental disabilities living at home with aging caregivers.

Karen Flippo, CEO of NACDD, expressed her thoughts about Zwyer, "Dave is a leader and a gentleman. He is greatly respected by his peers in the DD Council network because of his professionalism, intellect, his ability to weigh all sides of an issue before making a decision, his ease in getting along with people, his strong values regarding inclusion and self-determination, and his unselfish readiness to be of help and service whenever he is asked. We will miss him as a colleague and friend."

These words echo the thoughts of many Ohioans whose lives Zwyer has touched.

Looking Toward the Future

When asked what has changed the most since he joined ODDC, Zwyer enthusiastically responded, "Today, more than ever before, people with disabilities are invited to the table to share their concerns and ideas as policies and programs are being developed and refined."

Zwyer sees many challenges ahead for the field of disability advocacy, despite the increased involvement of people with disabilities. He emphasizes the importance of having policymakers keep the focus on community integration and self-determination for people with disabilities. "We should be making it possible for people to live and work in the community, rather than building new institutions and expanding sheltered workshops," said Zwyer.

Zwyer said he would remember most the wonderful friends he has made in his years with ODDC, especially people with disabilities who are improving their own lives "to be full participants in the American dream." In retirement, he looks forward to seeing more of his grandchildren and aging parents, and "getting serious about an exercise program again."

ODDC honors and thanks David Zwyer for his leadership, compassion, and unwavering commitment to Ohioans with developmental disabilities.

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Cincinnati's Advocacy Legacy Continues

by Paul Jarvis, ODDC

Cincinnati has long been recognized as the birthplace of disability advocacy. More than 60 years ago, parents of children with disabilities in Cincinnati joined to form what was known as the Association for Retarded Citizens (ARC) — now known as The Arc. Today that legacy lives on in state and local chapters in Ohio, and around the nation, as parents and self-advocates continue the fight for equality and opportunity for people with disabilities.

It is fitting that The Arc Hamilton County is implementing one of four ODDC Centers for Public Policy grants. These grants are used to develop regional resource centers that, according to Mary Butler, chair of ODDC's Public Policy Committee, become agile grassroots networks that can take action at a moment's notice. "The focus of these grants is to teach advocacy, encourage participation in public policy development, and empower advocates to build working relationships with their legislators and other policymakers," said Butler. "I think right now we have a great group of people working very hard to do just that."

Tom Eamoe, executive director of The Arc Hamilton County, and project director for the Center for Public Policy grant is addressing the need to nurture the relationship between advocates and policymakers. He arranges monthly meetings with them to discuss specific issues and concerns. The feedback gained from these meetings has been extremely positive. "We feel that bringing together policymakers and constituents is one of the chief strengths we have as an ODDC Center for Public Policy grantee," said Eamoe.

Advocacy Efforts Produce Results

The Arc Hamilton County has seen some very promising returns on their advocacy efforts. One example is the inclusion of Medicaid Buy-In in the state's operating budget, an issue the Hamilton County Center strongly advocated for, along with many other advocates across the state of Ohio.

Advocates also convinced state Senator Eric Kearney to introduce Senate Bill (SB) 165 to expand membership of county boards of mental retardation and developmental disabilities. The bill would add two individuals who are eligible to receive county board services to each board. Kearney also introduced amendments to Ohio's hate crimes law to include protection for people with disabilities. That bill, SB 349, was introduced on June 24, 2008.

Kearney isn't the only policymaker taking notice of advocates for people with disabilities. In April, Cincinnati City Councilman John Cranley introduced a proposal to restructure and expand the Southwest Ohio Regional Transit Authority to include Butler, Clermont and Warren Counties. The proposal was developed with considerable input from advocates of The Arc Hamilton County Center for Public Policy through the Transportation Regional Action Network, a project Eamoe and others created as a result of their work on current and previous local public policy grants.

For more information about the Centers for Public Policy, contact Paul Jarvis at (614) 644-5545 or Paul.Jarvis@dmr.state.oh.us.

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Chairman's Message

The ODDC organizational and program review is complete! This comprehensive review, conducted at the request of the Governor's Office, provides a report for ODDC to use as a planning resource, and recommendations designed to increase the organizational capacity of ODDC. This will enable ODDC to more efficiently and effectively create change that improves independence, productivity, and inclusion in community life for people with developmental disabilities and their families.

Dynamic Pathways, Inc., the organization that performed the review, provided an overview of the results and recommendations to ODDC members at the Council's May meeting. The full Council held a special meeting in June, facilitated by the Ohio Commission on Dispute Resolution, to analyze each recommendation. ODDC members reviewed, discussed, and then voted to accept, reject, or modify each of the 16 recommendations.

ODDC members accepted and endorsed all of the recommendations and elevated two of them to a high priority level: (1) expand the involvement of other organizations, and (2) engage in organizational planning. ODDC will begin implementing all recommendations over the next several months.

An internal audit of the Council's finances, at ODDC's request, was also recently completed by the Ohio Department of Mental Retardation and Developmental Disabilities (ODDC's fiscal agent under the Developmental Disabilities Act). Both the organizational and program review and the internal audit were conducted to improve ODDC's functioning, to increase operational effectiveness, and to ensure that fiscal obligations are managed in a responsible manner.

Our thanks to everyone who worked with the consultants and auditors to give ODDC a roadmap for change.

To request a copy of the ODDC organizational and program recommendations or the fiscal audit, contact Tammy Waller at (614) 466-5208 or email at: Tammy.Waller@dmr.state.oh.us.

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Do Ohio Initiatives Support Community Inclusion and Self-determination?

Ohio is initiating several programs that have the potential to increase choice and improve the lives of people with disabilities. Programs such as Medicaid Buy-In for Workers with Disabilities, HOME Choice (Money Follows the Person), healthcare expansion, and the reports and recommendations of the Futures Committee and the Unified Long Term Care Budget Workgroup are moving forward in Ohio. These initiatives can foster self-determination and improve community inclusion opportunities, giving people with disabilities the choice to live in the community, a civil rights issue for people with disabilities.

The DD Quarterly asked stakeholders from Ohio's disability community for their opinions about these initiatives. They were asked the following question:

Do you think current initiatives implemented in Ohio will increase opportunities for community inclusion and self-determination for Ohioans with disabilities?

Here are their responses.

"I think the Futures Committee will have an impact because they talked to people with disabilities and their families first to ask how to improve the system, and now they are taking their findings to collaborative organizations to recommend how the system can help reach those goals." (Robert Shuemak, self-advocate, 2006 graduate of Partners in Policymaking)
"We now have the tools to make community inclusion and self-determination a reality in Ohio. But there has been a tremendous expansion of Medicaid home and community based waivers during the last decade and the addition of long-overdue initiatives such as Medicaid Buy-In, but as we take one step forward, we have also stepped back. Disability specific schools are being reestablished throughout the state because our public schools have failed to meet parent expectations. Ohio's method of funding services to individuals with disabilities has created a system of haves and have nots, based on where one lives in the state; and, while our tax base weakens, the number of Ohioans with disabilities continues to grow. We have the tools, but true inclusion and the implementation of self-determination ideals must be implemented across all support systems rather than one state department at a time, with the active and integral participation of Ohioans with disabilities and their families." (Gary Tonks, executive director, The Arc of Ohio)
"There are people like me who have a hard time understanding the things they send to us in the mail. New programs need to be in words that we can understand." (Self-advocate, People First of Ohio)
"The state of Ohio needs to train the advocates. You can not learn about new things until you are given the chance to learn." (Self-advocate, People First of Ohio)
"I am very pleased with the changes I see in access to services and supports ... By and large, the service system is becoming more open to individual choice and control, and people with disabilities are assuming their rightful place in the 'driver's seat.' They are selecting their services and providers, and they are determining how money allocated to them is spent. Medicaid waivers, while still too administratively burdensome, have opened doors for individuals and helped local and state governments stretch limited dollars to purchase services for more people." (Cheryl Phipps, superintendent, Hamilton County Board of MRDD)
"Medicaid Buy-In is a great idea and will have an impact on people with disabilities, but it needs to be better publicized. The service support administrators in local county boards of MRDD need to understand it better so they can promote it as an option." (Bill Adelsberger, parent, 2000 graduate of Partners in Policymaking)
"All these initiatives have the potential to significantly increase community inclusion and self-determination; however, it will be imperative to publicize the initiatives and educate people about them so that people with disabilities and/or their caregivers will know how to take advantage of these initiatives." (Jane Novick, chair of Employment and Health Committee and parent, ODDC)
"Absolutely. Two key words in your question are 'increased opportunities.' Ohio's disability community has finally seen a change in how Ohioans and their leaders perceive having a disability thanks to the dedicated education and advocacy efforts of many disability organizations and their constituents. Ohio's government leaders also deserve credit. In spite of decreasing revenues they chose to institute Medicaid Buy-In. Money Follows the Person is exciting but carries state costs. They authorized those costs. And they increased waiver slots that enable community living. I am a person with a disability. I feared growing older here because I knew I would have to go into a nursing home for assistance I would need. No longer. I will have community-based options!" (Brenda Curtis, executive director, Ohio Statewide Independent Living Council)
"Several of the initiatives in the laundry list hold great promise for more consumer control and should support the tenets of self-determination. As with all new initiatives the devil is in the detail, and the ultimate outcomes depend upon us listening to individuals who will be impacted or will use the new services. For Medicaid Buy-In to be successful, we will need to rely on marketing the availability of the program and helping individuals through the tedious process of applying for a program with no track record. Many of the recommendations from the Future's group ... rely on a realistic and well supported implementation plan ... We must be vigilant in developing programs and services that honor and respect choice of the user." (Dan Ohler, executive director, Ohio Association of County Boards of MRDD)

What Do You Think?

Do you think current initiatives implemented in Ohio will increase opportunities for community inclusion and self-determination for Ohioans with disabilities? DD Quarterly would like to hear from you. Send your comments to newsletter@olrs.state.oh.us.

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Self-determination: Choosing the "Stuff of Life"

by Holly Binkley and Dee Zeffiro-Krenisky, Ed.D., Huron County Board of Mental Retardation and Developmental Disabilities (HCBMRDD)

A small group of people from the HCBMRDD recently attended the International Conference on Self-Determination. The three-day conference, held in Detroit, Michigan, welcomed more than 1,000 people who traveled from Britain, Australia, Ireland and 40 states in the U.S. The conference was coordinated by the Center for Self-Determination.

One presentation really hit home for Barb Penza and Rachel Jones from Huron County who attended the conference courtesy of the HCBMRDD. Penza and Jones heard about the "stuff of life" and about being in a position to make choices for themselves from conference presenter Michael Head, Michigan Department of Community Health. Penza and Jones learned from Head's presentation that to achieve self-determination, you must be the one who has the power and authority to make choices to do the things you dream of, put those dreams into action, and make those choices meaningful for yourself.

According to Penza, the "stuff of life" most important to her is deciding what activities to participate in after work and being able to spend time with the people she chooses. For example, she chooses to go on bike rides organized by a recreation program, one of her favorite activities. Being able to choose how she earns money at work is the "stuff of life" and a value to Jones. Jones said about her job at a document destruction facility, "I like to work on the shredding crew and going on pick-ups."

Penza, Jones, and other HCBMRDD attendees were also inspired by the thought-provoking words from individuals who are true examples of self-determination. One individual who started his own business was particularly impressive. He explained how he took full advantage of the natural supports in his life to help overcome barriers he encountered as a person with a disability. He discussed how he fought against the traditional support system to make his own choices about acquiring a wheelchair accessible van, his apartment, and his business.

People left the conference motivated and encouraged to put into action the "stuff of life" to achieve a self-determined life.

For information about the conference, go to International Conference on Self-Determination.

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Cultivating Youth Leadership

"Nothing about me, without me" is a self-determination rallying cry of individuals with disabilities and a common theme among advocacy groups. Many youth with disabilities share this ideal and want to have a voice in the decision-making that affects them. Organizations and programs are available to build their leadership skills to become strong advocates for their own self-determination, and take positions as advocacy leaders within the larger disability community.

Ohio's Youth Leadership Forum

Ohio's Youth Leadership Forum (YLF), a program of the Ohio Governor's Council on People with Disabilities, is designed to cultivate emerging young leaders with disabilities. The program receives support from ODDC and is sponsored by DD protection and advocacy partner; the Ohio Legal Rights Service. The YLF holds an annual leadership-training program for junior and senior high school students with disabilities. The program teaches community leadership and advocacy skills to youth by giving them opportunities to learn from and interact with legislators, experienced advocates, professionals with disabilities, and peers. Over 30 high school students from throughout the state participated in this year's forum.

Laura Hoffman was a delegate to the first Ohio YLF in 1999. Hoffman says her experience with YLF "guided my path in life, and solidified my interest in a legal career in disability law." Hoffman is a lawyer and also works as a development specialist for the National Youth Leadership Network where she advocates at the national level to empower young people with disabilities to become leaders.

Reflecting on her personal experiences as a person with a disability and an advocate, Hoffman has an astute understanding of what type of advocacy the disability community needs. "It is not enough to hope that society will do what is right to protect people with disabilities ... greater steps must be taken to ensure that such protection is not merely temporary which can be remedied through legal safeguards." In the fall, Hoffman will begin her graduate studies in disability law.

The Next Generation of Advocates

Young people with disabilities are the next generation of advocates and as young leaders, they bring a fresh and important advocacy perspective to the disability community. Youth with disabilities are encouraged to participate in programs such as Ohio's YLF to receive the training they need to build their leadership skills and make them key players in addressing the issues of today, and those that may still exist in their world tomorrow.

For more information about Ohio's YLF, visit the YLF website at Ohio Governor's Council on People with Disabilities Youth Leadership Forum or email James Clinkscale at james.clinkscale@rsc.state.oh.us.

More information about youth leadership

Youth Advocacy Leads to Social Change

In 1970, the first college students with severe disabilities to attend the University of California, Berkeley formed a group called the "Rolling Quads." Their goal was to assure greater access to their campus and their community, and they were the first to push for what was an innovation at the time, curb cuts.

Several of the students went on to create the university's Physically Disabled Students Program, which facilitated students' inclusion in the university community.

Seeking to affect a larger community, the students co-founded the first Center for Independent Living (CIL) in 1972. Young people with disabilities ran and directed the CIL. Today, hundreds of CILs exist across the United States modeled after that first student-conceived CIL, a testament to the impact young leaders can make.

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To Have Sight But No Vision: Inclusive Congregations

by Debra Petermann, Church Outreach Facilitator

Editor's note: People with disabilities often experience the same barriers accessing places of worship as they do with other areas of life. Inaccessible buildings, lack of inclusion in program activities, and attitudes and misperceptions of a person's disability all obstruct a person's ability to participate in the religious community of their choice. In this article, the author shares her vision of what congregations might look like if they truly welcome all people.

Helen Keller was once asked if she could think of anything worse than being blind. She replied, "Yes. To have sight but no vision."

In my role as church outreach facilitator, I assist congregations to develop inclusive programs within their own communities. Each community is different; therefore, there are many different starting places and different needs.

When I ask people if their congregation is inclusive for people with disabilities, they often think that means having accessible parking spaces and a wheelchair accessible bathroom. Access to a building is important, but what about people with disabilities who do not have a problem with entering and using the building, such as people with invisible disabilities or sensory integration issues? Instead, their barrier may be that they are unable to participate in the congregation's programs because accommodations are not available to meet their needs. Inclusive programming is the answer and the very thing needed to jump start the heart of congregations to have a vision so that all may worship.

When the vision of full inclusion is embraced and supported by congregation leaders, this vision passes on to the entire congregation. People with willing hearts and those who are professionals in the disability field choose to share their talents to come up with creative solutions for inclusive programming. With their vision, experience, and ideas, any congregation can support a level of inclusion for people with disabilities.

For example, one congregation made a sensory break room (calming room) for people with behavioral or sensory disabilities, an option for caregivers to use if they feel it is necessary. Another solution was the creation of a "buddy system" for children with special needs so they can attend classes of the congregation's programs for children. The buddies must be members of the congregation, receive training, and then they are scheduled to work with one or two children.

We all have a purpose for why we are here. All of us. It is in the community that we can help each other identify that purpose and to encourage all to use their gifts and talents. There will always be people who have specific, special needs and there may be some circumstances that make it hard for congregations to address. But if we allow our creativity and our vision of diversity to flow, we truly can be an amazing community of people. Open your eyes and imagine what that looks like!

For more information, contact Debra Petermann by email at dpetermann@joniandfriends.org or phone at 614-259-5257. Or visit Joni and Friends.

About the author: Debra Petermann is the outreach facilitator for Joni and Friends Ohio. Debra and her brother, Rodney, live in central Ohio. Rodney is Debra's inspiration for sharing her vision with congregations to truly welcome all people. Debra said about Rodney, "Though the world might label him as a non-contributor to society, he has been used in a mighty way to impact my family and church community, especially toward those who are usually left in the margins of life. We need people like my brother in our midst to teach and challenge us to be a more compassionate community."

More information about inclusive congregations

Accessible Congregations Campaign

One national initiative is the Accessible Congregations Campaign through the National Organization on Disability's (NOD) Religion and Disability Program. Over 2,000 congregations in the United States joined the campaign and are committed to "identifying and removing barriers of architecture, communications, and attitudes." Check NOD's list of committed congregations to see if places of worship in your community are involved.

Attitudes and Misperceptions

Even when a place of worship is accessible and inclusive programming is available, attitudes and misperceptions may still be an issue. Earlier this year, a church in Minnesota filed a restraining order against the parents of a 13-year-old boy with autism, stating that the boy was a danger to others due to his "disruptive and violent behavior." The mother explained that these behaviors were related to her son's calming and coping mechanisms and he did not pose a danger to others. The parents' asked for a court hearing on the restraining order, on the grounds that it is a form of discrimination. The judge upheld the restraining order. The family may appeal the decision and feel that lack of education and understanding about autism is the root of the problem. Meanwhile, the family, including their son, is attending another church.

Resources

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Emergency Preparedness for People with Functional Needs in Southwest Ohio

by Peter Keiser, LISW, Advocacy Coordinator, University of Cincinnati, University Center for Excellence in Developmental Disabilities (UCEDD), Cincinnati Children's Hospital Medical Center

Meeting the needs of people with functional needs in times of emergency or disaster is the focus of the Emergency Preparedness Collaborative (EPC). Over 60 members contribute to this strong collaborative effort, with representatives from emergency management agencies, health departments, Red Cross, people with functional needs and agencies that serve them, the Hispanic community, the Asian community, first responders and the media. Their work benefits people who live in southwest Ohio in Adams, Brown, Butler, Clermont, Clinton, Hamilton, Highland, and Warren counties.

From Coalition to Collaborative

In 2006, Hamilton County Public Health, the Warren County Combined Health District, and the Inclusion Network launched a broad-based region-wide coalition to prepare a disaster response to accommodate everyone who needs additional supports during an emergency. The Cincinnati UCEDD became an active participant early on and the result of the coalition's initiative was the formation of the EPC.

The EPC is managed by a 12-member Operations Committee which divides its work into three workgroups: Communication, Sheltering/Self Care, and Evacuation/Transportation. The Cincinnati UCEDD is particularly active with the Communication and Evacuation/Transportation workgroups. Each workgroup created a three-year strategic plan. Examples of goals of the workgroups are:

EPC Members Work to Educate the Public

EPC members distributed thousands of the Emergency Management Be Prepared Kit, produced by the Ohio Legal Rights Service in partnership with the Ohio Developmental Disabilities Partners and others. EPC members are also assisting the Council on Aging of Southwestern Ohio in planning a major event, Be Prepared Ohio, scheduled for this September. The event is expected to draw up to 500 people with functional needs, older adults, caregivers, and service providers and will inform and empower people with functional needs about how to be better prepared in case of an emergency.

Robin Thomas, chief nurse, Emergency Services from the Cincinnati Red Cross states: "People with disabilities will benefit from extra support and education to prepare for emergencies. As a primary provider of disaster preparedness information, Red Cross membership in the EPC has helped us further our mission to help people prevent, prepare, and respond to emergencies."

For more information, contact Peter Keiser at peter.keiser@cchmc.org or Tom Gannon at tom.gannon@cchmc.org.

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Studies Aim to Help Children with Autism and Other Behavioral Disorders

by Bethany Bates and Ashley Reno, Clinical Research Coordinators at Nisonger Center, University Center of Excellence in Developmental Disabilities (UCEDD)

The Research Unit on Pediatric Psychopharmacology (RUPP) at The Ohio State University Nisonger Center engages in research studies to help improve the lives of children and adolescents diagnosed with autism spectrum disorder, attention deficit hyperactivity disorder (ADHD), disruptive behavior disorder, and other childhood developmental disorders. The overarching goal of RUPP is to study the safety and effectiveness of pharmacological agents and other treatments, such as behavioral, nutritional, and alternative methods, used to modify behaviors of children with these diagnoses.

Currently, RUPP is conducting four independent studies assessing the effects of medications (risperidone, mecamylamine, fluoxetine, and melatonin) on behaviors related to autism spectrum disorder, such as irritability and aggression, compulsive and repetitive behaviors, and sleep disturbances.

Four new studies will begin within the next 3 - 6 months. These studies will investigate the effects of different treatments for ADHD, such as EEG neurofeedback, parent management training, exercise treatments, intensive reading tutoring, and medications (atomoxetine, risperidone and concerta).

RUPP plans to continue conducting innovative research in the hopes of helping children with developmental disorders and their families. All study evaluations and treatments are free of charge and there is some reimbursement for transportation.

A full workup, including a diagnostic assessment, is completed prior to treatment. Summaries of all the child's study documents are also available to parents and their family physician.

For further information about RUPP's research activities, call (614) 292-3698, or visit the RUPP website.

Study Results Show Dramatic Improvements in Child's Behaviors

RUPP investigated the treatment of irritability and aggression associated with autism spectrum disorder in a 2003-2007 study of 53 children. One of the children in the study, a seven-year-old with autism and significant intellectual disability, experienced severe hyperactivity and irritability and had problems with destructive and repetitive behaviors. After 11 weeks in the study, which involved training the parents in behavioral principles and providing their child a medication for irritability, the parents reported improvements. Assessments throughout the study showed a marked decrease in the child's irritability, hyperactivity, repetitive behaviors, and destructive behaviors and an improvement in self-help skills. Overall, the child was rated as "very much improved" by clinicians at the end of the study.

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Will Unionizing Efforts Support People with Disabilities in the Community?

National statistics show it and people with disabilities live with it: a shortage in the direct care support workforce.

Direct support professionals (DSPs) provide people with disabilities the services and care they need to stay in their homes and communities. However, this workforce is shrinking and many people with disabilities know the difficulty of finding and keeping a DSP. If the shortage continues, the ability of people with disabilities to stay in their community may be threatened, putting them at risk of placement in a nursing home, hospital, or institution.

Can Unions Help?

Steven J. Taylor, Ph.D. of the Center on Human Policy, Syracuse University researched the direct support workforce crisis and reported his findings and recommendations in a policy paper, The Direct Support Workforce Crisis: Can Unions Help Resolve This? Taylor reports two contributing factors to the workforce crisis: high turnover rates (50%) and high vacancy rates (10%). He projects that 1.2 million DSPs will be needed by 2020; an expected increase of 37%, yet the number of DSPs to join the workforce is only expected to increase 7%.

One solution to the workforce shortage is unionizing DSPs, according to Taylor. But Taylor warns, "Any solution to the direct workforce crisis must leave room for self-directed approaches and this new form of relationship between consumers and support workers." Taylor points out that establishing a union for DSPs gives them incentive to work by providing better pay and benefits. People with disabilities also benefit from unionization. Taylor writes, "People with intellectual or developmental disabilities benefit when their support workers receive fair wages and benefits and are well-trained and respected."

Will Unionization Affect Services for People with Disabilities?

Taylor states in the report that the "unionization of workers is one potential way of addressing [the workforce] crisis. It would be counter-productive to reject unions out-of-hand. At the same time, unionization could do more harm than good if it is not done in a thoughtful way or if unions are willing to sacrifice the interests and rights of people with disabilities." He provides several recommendations for assuring that the formation of a union will not negatively affect people with disabilities.

Does the unionization of Ohio's independent providers follow Taylor's recommendations? The DD Quarterly contacted Christine Kozobarich, Ohio's SEIU coalition builder and former member of the Ohio Olmstead Task Force to find answers to this question.

Taylor recommends: Although unions necessarily put the interests of workers first, they must also support the values surrounding full inclusion and community participation for people with disabilities. Improved benefits for workers must not come at the expense of people with disabilities and their families. Efforts to unionize workers must be tied to policy initiatives to increase the funding available for worker wages and benefits.

In Ohio: Kozobarich stated that the union is supportive of the interests of people with disabilities. "SEIU is an advocate for funding increases in home and community based waivers. A basic problem is that there aren't enough dollars in the community service system," said Kozobarich. "We believe that caregivers, consumer communities, and the state must work hand-in-hand to address issues and create a system that values the input of all. By working together, we have the ability to create a better home care system in Ohio."

Taylor recommends: Consistent with self-directed and individual funding approaches, individuals with disabilities or their families must have the ability and sole authority to select, supervise, and terminate the relationship with unionized direct support workers. For individuals who are supported in their own homes, unions must agree to forego strikes or other actions that would place people at risk.

In Ohio: The Governor has issued an executive order that prohibits strikes, and states that the consumer retains the absolute right to choose his or her independent home care providers and to control their hiring, termination, and in-home supervision. Kozobarich adds that there will not be a grievance procedure or recourse for an independent provider who is fired.

Taylor recommends: Community providers must have the ability to set reasonable performance standards and training expectations for workers.

In Ohio: Kozobarich states that a crucial component of improving the workforce is improving the quality of available caregivers, and part of that is accomplished by investing in training. Current negotiations between SEIU and the Office of Collective Bargaining include better access to training for independent providers.

Conclusion

Taylor concludes that if the direct support workforce crisis is not resolved, the effects on people with disabilities and their families may be out of their control. According to Taylor's report, unionization, especially when a union supports both people with disabilities and the DSPs, is a productive and constructive way to find a solution to the crisis. If implemented correctly, unionizing the DSP workforce will have a positive impact on people with disabilities by providing them with a stable provider workforce, thus allowing them to receive quality care and continue living in their home and community.

For more information:

What Do You Think?

What is your opinion about unionizing DSPs in Ohio? DD Quarterly would like to hear from you. Send your comments to newsletter@olrs.state.oh.us.

More information about improving the direct care professional workforce

Union Forms for Ohio Independent Providers

Ohio is in the midst of unionizing its direct support workforce. An executive order signed by the Governor in July 2007 established collective bargaining (unionizing) rights for independent home health care workers who are providers of ongoing Medicaid reimbursed direct care services that are paid for through an Ohio Medicaid waiver program (Ohio Home Care, Transitions MRDD, Transitions Carve-Out, Individual Options, Level One, and Choices waivers) and not employed by a private agency. Nearly 7,000 independent providers voted to join the Service Employees International Union (SEIU) in September 2007. SEIU is now working with the state's Office of Collective Bargaining to negotiate for the terms of the union contract. The negotiations are still in process.

Ohio PATHS

ODDC promotes the value of direct care professionals through its grant for Ohio PATHS (Professional Achievement through Training and Education in Human Services), a credentialing path for DSPs. Ohio's PATH is intended to legitimatize direct support as a professional field, and thereby improve compensation, retention and recruitment of direct care professionals, and increase quality of care for individuals with developmental disabilities.

For information on Ohio PATHS, contact Amy Gerowitz, P.O. Box 8127, Cincinnati, Ohio, 45208. By phone (513) 871-0835, or email agerowitz@ohiopaths.org, or visit the Ohio PATHS website.

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Knight Named Interim Director at ODDC

Members of ODDC voted, at their July meeting, to approve Carolyn Knight as interim director. Knight, former director of Ohio Legal Rights Service and a member of ODDC for many years in that capacity, brings a history of accomplishments in the disability field to this position. She will begin in mid-August.

David Zwyer, current executive director of ODDC said, "With her experience and knowledge of Council, there should be a very smooth transition. Carolyn is the perfect match for this interim position." Zwyer also added that the appointment of Knight will give ODDC the necessary time to conduct a national search for a permanent director.

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A Tribute to Sonya Mawhorter

Sonya Mawhorter, executive director of the Ohio League for the Mentally Retarded (OLMR) passed away in May. During her 15 years of service to OLMR, Mawhorter helped transform it from a small group of concerned parents to a 7,000-member statewide organization advocating on behalf of family members and individuals with mental retardation and developmental disabilities (MRDD).

"Under Sonya's leadership, OLMR became one of the most powerful family advocacy organizations in Ohio. Her philosophy was based on family and individual choice. Sonya was unyielding in her fight to ensure all individuals with disabilities were heard, not just the most vocal," said Monty Blanton, MRDD Assembly President of the Ohio Civil Service Employees Association.

Reflecting on Mawhorter's recent involvement with the MRDD Futures Committee, Dan Ohler, executive director of the Ohio Association of County Boards of MRDD, described the impact Mawhorter had on Ohio's MRDD community. "She wasn't afraid to speak up and ask the necessary questions. She was extremely knowledgeable, not only of the needs of people with developmental disabilities, but also their families as well. Sonya advocated for doing 'more with less.' She was someone the entire group respected because she knew what she was talking about," said Ohler.

Mawhorter also served individuals with disabilities as chief executive officer for the Alfred S. Carr Center, and was a coordinator with the Muskingum County Health Department. She was a board member for several community organizations in Zanesville.

"Sonya was a true advocate for individuals with mental retardation and developmental disabilities and was a tower of strength and compassion for many, many parents, caregivers and loved ones," said Al Leist, president, OLMR.

"From the outset I admired her passion on behalf of people with disabilities. Countless individuals in Ohio were the beneficiaries of her advocacy on their behalf. She will be missed," added David Zwyer, executive director ODDC.

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Meet ODDC's New Members

Three new family members attended their first ODDC meeting in June. These parents were appointed by Governor Strickland to represent families of children with disabilities. Each of these new members has extensive experience advocating for people with disabilities. ODDC looks forward to their input and participation.

Tina Adams

Tina Adams is an environmental engineer and the parent of two sons who both have autism.

Adams has advocated for many years within the autism community, and is a graduate of the Partners in Policymaking program. Before moving to Ohio, she served on West Virginia's Developmental Disabilities Council.

Adams is most interested in autism advocacy, but wants to improve opportunities for all individuals with disabilities, "especially in southeast Ohio and other rural areas where services and education are limited," said Adams.

Margaret Demko

Margaret Demko was a special education teacher for children with emotional disorders, and worked as a mentor for children with substance abuse issues, or who are at high risk of developing substance abuse addictions.

"With the birth of my daughter in 2004, I became involved in disability awareness programs," said Demko. Since then she has been a member of the Athens County Board of Mental Retardation and Developmental Disabilities (MRDD), the Down Syndrome Association of Central Ohio, and is currently the president of The Arc of Athens County. Demko is also active in public policy programs for health care reform and is a consultant for Voices for Ohio's Children and the Universal Health Care Action Network (UHCAN) Ohio.

"I am most interested in public policy issues, children's issues, and public awareness within ODDC," says Demko.

Angela Denny

Angela Denny, Ph.D., certified rehabilitation counselor, works as a counselor and consultant within the field of disability for adults and children and as a vocational economic analyst, and is a parent of a child with autism spectrum disorder.

Denny states that she "recognizes the importance of being able to adequately research, coordinate, and manage the many layers of interventions, supports, and services necessary in attaining and maintaining the highest level of functioning for individuals with developmental disabilities within the community throughout their lifespan."

Denny is most interested in employment issues and children's issues.

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ODDC Seeks Applicants for Membership

The Ohio Developmental Disabilities Council (ODDC) is currently seeking applicants for membership terms beginning in October, 2008. Council membership must comply with categories listed in the federal Developmental Disabilities Act.

Openings this year will be for the following categories: a) two (2) individuals with a developmental disability, and/or b) two (2) parents or guardians of children with a developmental disability. It is possible that one (1) representative will also be selected from a non-governmental agency or private nonprofit group concerned with services for individuals with developmental disabilities.

All candidates for ODDC membership should have experience serving on committees, boards, or organizations. Such experience concerned with persons with developmental disabilities would be especially relevant. Applicants should have first-hand knowledge about developmental disabilities in Ohio.

It is very important that applicants have time to attend six meetings per year and serve on at least two committees. Each meeting of Council occurs over a two-day period.

Serving as a member of Council provides the opportunity to get involved and work in a collaborative manner with state and federal policymakers, state and local providers, and individuals with developmental disabilities and their family members. Council advocates to improve the system of supports and services for individuals with developmental disabilities and their families, and it conducts grant activities for the same purpose.

Governor Ted Strickland will appoint members for three-year terms beginning October 1, 2008 and ending September 30, 2011. Application packets are available from the ODDC office and must be completed and returned to the office by August 1, 2008. Applications may be requested:

Applications due by August 1, 2008.

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Finding Affordable, Accessible Housing Using Ohio's Rental Housing Locator

by Janet Hofmann, Housing and Transportation Program Administrator, Ohio Department of Aging

Finding a good place to live — one that meets your individual needs — can be especially difficult if you have a disability. The search is becoming easier with Ohio's Rental Housing Locator, a free online database at www.OhioHousingLocator.org.

Home seekers can use the Rental Housing Locator to search for affordable, accessible rental housing in Ohio. The Locator allows people to search by city, county, or zip code, and by cost and unit size. Listings also provide information on amenities, supportive services, and accessibility features. "The Housing Locator is a vital tool for our HOME Choice program," said Brock Robertson, Housing Coordinator for the Ohio Department of Job and Family Services. HOME Choice, formerly known as Money Follows the Person, is an initiative to help people move out of institutions into housing with community supports. "The Locator will provide our transition coordinators and the people they serve with access to information on affordable rental housing, including specific accessibility features and current vacancies," said Robertson.

The Rental Housing Locator is designed as a registry for property owners and management companies, who can enter, access, and update their property information 24-hours a day, seven days a week, free of charge. During the first nine months online, nearly 1,000 property listings from all Ohio counties were entered into the registry.

Promoting the Rental Housing Locator

The state continues to recruit property management companies and public housing authorities (PHAs) to register their rental housing on the Rental Housing Locator. You can help by recruiting your local PHA to list properties in the registry. Fair housing law requires PHAs and other affordable housing providers to show due diligence that they are marketing their housing to everyone — including people with disabilities. The Rental Housing Locator offers them a way to give people access to information about cost, accessibility, and other important features of their properties.

ODDC Funds Contribute to Success

The Rental Housing Locator website is a joint venture funded by five agencies: the Ohio Departments of Development, Aging, and Job and Family Services; the Ohio Housing Finance Agency; and the ODDC. ODDC provided grant funding for the Ohio Department of Aging (ODA) to improve the Rental Housing Locator and market it to people with disabilities, their families, and advocates.

"This website has potential to be a wonderful resource," said Barbara Riley, director of the ODA. "We are happy to be part of this partnership to provide an easy source of information for Ohioans seeking affordable, accessible housing."

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News from Ohio Legal Rights Service

Preliminary Injunction Prevents Loss of Medically Necessary Services

A federal judge has issued a preliminary injunction to prevent the implementation of proposed state rules that would have eliminated Medicaid reimbursement for medically necessary services to children with autism. The decision is in effect until further order of the court and is a legal protection for children who would face losing these critical services.

United States District Judge James Graham issued the injunction as a result of a lawsuit filed by OLRS on behalf of three of the children and the Parents' League for Effective Autism Services (PLEAS), an association of parents and families who were receiving Medicaid services. The injunction prohibits the defendants, the Ohio Departments of Job and Family Services (ODJFS) and Mental Health (ODMH), from implementing rules that would have otherwise gone into effect on July 1, 2008.

At a court hearing, parents of children with autism and a psychologist gave powerful testimony about the children's medical need for intensive behavioral services. They told the court the children had no other options for services and risked substantial regression in their behavior and skills.

Judge Graham viewed the proposed rules as an effort to avoid having to pay for certain services under the federal Early Periodic Screening, Diagnosis and Treatment (EPSDT) requirement, and that the defendants interpreted the federal Medicaid law too restrictively.

The court also denied the Defendants' motion to dismiss the case and ruled that the Plaintiffs had properly brought a claim under Section 1983 for violations of their federal rights under the federal Medicaid law, that OLRS lawyers could represent the PLEAS association, and that the association has standing to sue as a Plaintiff.

ODJFS and ODMH have appealed the case to the United States Court of Appeals for the Sixth Circuit.

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OLRS Seeks Input for Long Range Planning

Under the guidance of the OLRS Commission, OLRS has started its strategic planning process for creating a long range plan for the agency. The intent of the planning process is to systematically identify strategies and activities to achieve OLRS' vision and mission and ultimately to improve client directed protection and advocacy services to Ohioans with disabilities.

OLRS developed a survey to seek input and gather information from stakeholders, especially those who use or are eligible to use OLRS' services. The survey is designed to evaluate perceptions, satisfaction, and needs. Your opinions and insight are valued — please complete the survey to tell us about your experiences and to help us identify major issues facing people with disabilities and how OLRS can address those issues.

The survey results will help OLRS understand what programs need to be developed, how the agency can improve its service delivery, and what changes are needed in the agency's priorities to more effectively address protection and advocacy needs for people with disabilities in Ohio. This information will be used to shape the long range plan for the agency.

To take OLRS' Strategic Planning Survey, go to OLRS Strategic Planning Survey .

Paper copies are also available by contacting Tom Hemmert by e-mail at themmert@olrs.state.oh.us or by phone at 1-800-282-9181 (voice) or 1-800-858-3542 (TTY).

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Upcoming Conferences

Ohio Self Determination Association 2008 Conference

The Ohio Self Determination Association annual conference will be held September 16 - 17, 2008 at the University Plaza Hotel in Columbus, Ohio. Conference registration brochures will be available in July. For more information: Ohio Self Determination Association 2008 Conference

Be Prepared Ohio

This event, held during National Preparedness Month, will bring together emergency responders, public health and social service agencies, people with functional needs, and caregivers to share information and resources on how to prepare for emergencies. When: September 22, 2008. Where: Sharonville Convention Center, Sharonville, Ohio. For information, contact Amy Leonhardt, Council on Aging of Southwestern Ohio, at (513) 345-3367 or aleonhardt@help4seniors.org.

The Brain Injury Association's 27th Annual Conference

The conference, Homeland of Hope: Connecting Mind, Body, Soul, will provide a review of the latest requirements for Individualized Education Program (IEP) transition plans, best practices in transition planning, and implications for students with autism spectrum disorders. When: September 18 - 19, 2008. Where: University Plaza Hotel and Conference Center, Columbus, Ohio. For registration and information visit the Brain Injury Association of Ohio website.

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Sign-up to receive e-mail notification of future editions of the DD Quarterly

If you would like to receive e-mail notification when the DD Quarterly is published, contact:

Ohio Developmental Disabilities Council
Attn: Carla Sykes
8 E. Long Street, Suite 1200
Columbus, Ohio 43215
Voice: 614-466-5205 or 800-766-7426
TTY: 614-644-5530
Fax: 614-466-0298
E-mail: Carla.Sykes@dmr.state.oh.us

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Tell us your comments and suggestions for the newsletter

DD Quarterly is produced by the Ohio Legal Rights Service. To share your comments or suggestions about the newsletter, contact:

Ohio Legal Rights Service
Attn: Tom Hemmert
50 W. Broad Street, Suite 1400
Columbus, Ohio 43215
Voice: 614-466-7264 or 800-282-9181
TTY: 614-728-2553 or 800-858-3542
Fax: 614-644-1888
E-mail: Newsletter@olrs.state.oh.us

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About ODDC

The Ohio Developmental Disabilities Council is a group of 35 people, appointed by the governor, who plan and advocate for Ohioans with disabilities. ODDC receives federal funds and distributes those funds by awarding grants for projects and activities that create visions, influence public policy, pilot new approaches, empower individuals and families, and advocate system change. Contact information for ODDC is: 8 East Long Street, Suite 1200 Columbus, Ohio 43215, Voice phone: (614) 466-5205 (800) 766-7426 (Toll free in Ohio); TTY: (614) 644-5530; Fax: (614) 466-0298; Web site: www.ddc.ohio.gov

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DD Quarterly Collaboration

The DD Quarterly newsletter is an ongoing collaboration among the Ohio Developmental Disabilities Council, Ohio Legal Rights Service, the Nisonger Center and the University of Cincinnati, University Center of Excellence in Developmental Disabilities.

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