In this issue:
- Ohioans with Disabilities Charged to Advocate for Health Care Reform
- ODDC Advocacy Award
- FSCouncil Issue Brief Calls for a Quality Family Support System
- ODDC Summarizes Testimony of Employment Forum Participants
- Washington County Honors Advocates
About the DD Quarterly
Copyright © 2009, Content may be reprinted upon request.
Ohioans with Disabilities Charged to Advocate for Health Care Reform
The message, America's health care system must be reformed, was clearly heard and supported by those attending ODDC's annual conference. Participants left the conference with the understanding that health care must be redesigned to assure quality, accessible and affordable health care for all Americans — especially the 54 million people with disabilities.
The conference, Health Reform for People with Disabilities, was emceed by Tim Harrington, executive director of The Ability Center of Greater Toledo. Harrington, in his opening remarks said, "It is interesting that we have a room full of people with disabilities gathered here today but on a national level, the issue of disability is almost vacant from the reform discussion. Hopefully, this conference will provide you with information to empower you to make an impact on health care reform."
Featured Speakers
The conference included several individual presentations and a series of panel discussions highlighting personal experiences and other health care issues important to people with disabilities.
U.S. Representative Mary Jo Kilroy, from Ohio's 15th District, did not attend the conference due to scheduling conflicts in Washington D.C. but did provide a video developed specifically for the conference. She expressed that "health care is the most pressing issue facing America today and that the status quo of health care is unacceptable." Kilroy, who describes herself as having a disability, invited the audience to join her in the fight for better health care.
Other featured speakers at the conference included Col Owens, senior attorney, Legal Aid Society of Southwest Ohio, Cathy Levine, executive director of Universal Health Care Action Network of Ohio (UCHAN) and Mary Jo Hudson, director, Ohio Department of Insurance.
Their individual presentations highlighted the need to reform health care now. They provided the attendees an overview of current health care costs to the nation and costs associated with reforming health care. Details of House and Senate proposals for health care reform were summarized and the funding strategies were explained. The need for health care reform in Ohio was noted — there are 1.3 million Ohioans who are uninsured. Hudson commented "improving health insurance coverage in Ohio is a top priority of the Governor."
Panel Discussions
Panelists were people with disabilities who are uniquely qualified to speak about their experiences accessing the current health care system. The panelists told their nightmare stories about insensitive health care providers and the inefficiencies of and exclusions from the health care system. Harrington, after the panel sessions, said "Nothing is more valuable than bringing it right down to the consumer perspective."
Some panelists were providers who spoke about specific health care issues including medical provider transitions, dental programs, disability training for health care providers and reasonable accommodations in medical situations.
Closing Comments
Ohio advocates Betsy Johnson, NAMI Ohio, Beverly Johnson Cerebral Palsy Association of Ohio, Holly Pendell, National Multiple Sclerosis Society and Carolyn Knight, executive director of ODDC, spoke at the conference emphasizing the inequities of the current system and the potential impact health care reform will have on people with disabilities. Pendell encouraged the conferees to advocate for health care reform by contacting their legislator in Washington, and by writing letters to the editors of their local newspapers. Beverly Johnson, acknowledging the efficacy of past advocacy efforts of people with disabilities, inspired the group when she said, "Tenacity of advocates in the disability community has resulted in and will continue to result in improvements in health care reform."
Knight, in her closing comments said she wants to keep the health care reform movement a priority in Ohio and the nation. She felt the presentations raised awareness about critical points regarding health care reform and provided the conference attendees information and motivation. She encouraged self advocates to use the information they learned to advocate for an improved health care system.
Recurring Health Care Reform Themes Heard at the Conference
- All Americans, especially people with disabilities, must have access to high quality, affordable, sustainable health care.
- The term pre-existing condition must be eliminated.
- There must be no annual or lifetime caps on health care coverage.
Conference Sponsors
ODDC's annual conference, held on October 27, 2009 at the Hyatt Regency Hotel in Columbus, was cosponsored by the Developmental Disability Network Partners: Nisonger Center, The Ohio State University; Ohio Legal Rights Service; and the University Center of Excellence in Developmental Disabilities, University of Cincinnati.
ODDC Advocacy Award
An advocacy award is presented at ODDC's annual conference to honor a person or organization that improves the lives of people with disabilities. The 2009 ODDC Advocacy Award winners are four leaders of the Athens County Personnel Plus Advisory and Advocacy Council: Andy Leinbaugh, Jason Licht, Glenda Murray and William Peacock.
These four advocates were influential in their advocacy efforts in the name change legislation that removed the term "mental retardation" from the names of state and county agencies supporting individuals with developmental disabilities.
Dee Tobias, ODDC member, presented the award to the group. Tobias said the name change legislation "was a long-needed change in the state of Ohio" and commended the award winners for their leadership and effective advocacy.
FSCouncil Issue Brief Calls for a Quality Family Support System
Local and state policymakers throughout Ohio are more aware of the need for an improved family support system for all families who provide care for children with any disability. The Family Support Council (FSCouncil), a grant funded by ODDC and administered by the Ohio Legal Rights Service (OLRS) published and distributed a Family Support Issue Brief to policymakers. Family members of the FSCouncil wrote the Issue Brief and several statewide agencies and organizations endorse it.
The Issue Brief calls for Ohio to develop a cross-disability non-categorical and comprehensive family support system that is responsive to the needs of families. Family caregivers make independence and inclusion possible, but they need support to meet the physical, emotional and economic demands of every day living. Too often, the contributions of parents and other family caregivers are taken for granted and undervalued.
Family Support Defined
Family support is defined in the Issue Brief as an array of practical supports that are determined by each family's unique needs and the belief that all children belong with caring families. The intent of family support is to provide or arrange for individualized, necessary supports that prevent crises and out-of-home residential placements.
Principles of Family Support
The FSCouncil identifies several principles for effective family support. They report that a quality family support system:
- is family-directed and family-controlled and involves families in all phases of design, construction, administration, evaluation and governance.
- views families as the primary resource and decision maker for their child.
- includes individual supports, services and material items that provide "whatever it takes, whenever it is needed" to keep families together and healthy.
- builds on family strengths and based on family preference, choices and values and not on administrative expedience.
- includes resources reserved for emergencies as determined by the family.
- is proactive, fair, flexible, easily accessible, affordable and continually responsive to changing family needs, roles and ages.
- coordinates with the general service delivery system to assure maximum efficiency.
Issues
Applying these principles of family support as guidance, the FSCouncil uses the brief to explain the economic impact on caregivers, pointing out that for over three decades, researchers from the United States and internationally have documented the need for and the cost effectiveness of family support programs. For example, the financial costs of caring for children with disabilities are considerable. Families can have significant unreimbursed out-of-pocket expenses for health care, assistive technology and other necessary items. The problem is compounded by the fact that these families' average median income is almost one quarter lower than families raising typical children.
The Issue Brief also points out that Ohio's spending of resources benefits facilities rather than families. Historically, Ohio spends a disproportionate amount of long term care funds on services to people living in large facilities rather than funding supports needed to keep people in their home. The Issue Brief reports that in fiscal year 2006, Ohio spent 83% of its Medicaid long-term care budget for older adults and adults with disabilities in nursing homes, despite an AARP study showing that an overwhelming majority of consumers prefer to remain in their home or community.
"There is a clear need for an inclusive family support system that meets individual needs and provides meaningful choices," states the FSCouncil in its brief. The FSCouncil further emphasizes that the support system must be statewide with consistent rules and policies across all human service systems and funding streams. Doing so will ensure that families stay together and stay healthy.
Recommendations
The FSCouncil concludes the brief with a list of recommendations pointing out that family caregivers save Ohio millions of dollars annually and that implementing the recommendations is good public policy and fiscally responsible government spending. Furthermore, creating a family-determined, cross-systems family support system is essential so that families stay together, and to afford all family members equal opportunities to participate in schools, workplaces and neighborhoods. The FSCouncil recommends that Ohio:
- Develop and fund a statewide, cross-disability, comprehensive family support system that includes respite.
- Implement a universal assessment system to evaluate the needs of family caregivers.
- Reimburse family caregivers equitably and protect them from discrimination.
- Adequately reimburse direct support workers and continue efforts to recruit, train and evaluate them.
- Implement the Unified Long-Term Care Budget based on consumer choice and need.
- Develop a mechanism to assure family involvement and family control of Ohio's comprehensive family support system.
Read the Family Support Council Issue Brief (PDF file) on the ODDC website. To request copies of the paper version, contact ODDC at (800) 766-7426.
FSCouncil
The FSCouncil was a statewide group of family advocates who have a child with a disability and state agency representatives. Together they are advocating for a system of supports and services that is designed to meet the needs of families and is family-directed and family-driven.
Organizations Supporting the Family Support Issue Brief
The following agencies and organizations fully endorse the implementation of the recommendations and support a statewide, comprehensive family support system.
- Cerebral Palsy Association of Ohio
- Easter Seals of Ohio
- Federation of Families for Children's Mental Health
- NAMI Ohio
- Ohio Brain Injury Association
- Ohio Coalition for the Education of Children with Disabilities
- Ohio Developmental Disabilities Council
- Ohio Governor's Council on People with Disabilities
- Ohio Legal Rights Service
- Ohio Olmstead Task Force
- Ohio Self Determination Association
- Ohio Statewide Independent Living Council
- Ohio's University Centers on Excellence in Developmental Disabilities (University of Cincinnati and Nisonger Center at The Ohio State University)
- People First of Ohio
ODDC Summarizes Testimony of Employment Forum Participants
Powerful testimony from more than 50 people with disabilities who attended ODDC's Employment Forum were summarized and published in a booklet developed by ODDC and the AXIS Center for Public Awareness. "Developing Successful Employment Opportunities" highlights testimony heard at the August forum and reflects individuals' employment experiences, successes, barriers, frustrations and suggestions for improvement.
Over 150 family members, self-advocates, service providers and policymakers listened as people with disabilities testified. They offered perspectives from those who are unemployed and looking for a job, currently employed, retired, self-employed or just entering the workforce.
Frustrations, Difficulties and Barriers
Both those who are employed and those who are unemployed expressed frustration with programs and policies designed to help them find employment. These individuals described difficulty with transportation, attitudinal barriers, discrimination and the inadequacy of services and supports.
"Either they were dropping me off late or picking me up early — if they showed up at all," said Pam Stapleton of Columbus when commenting about transportation barriers. She was one of many who shared concerns about transportation issues that cause problems getting to and from job interviews and job sites. Unreliable transportation, transportation schedules that do not accommodate work hours and lack of any transportation were identified.
Discrimination during interviews and on the job was another common theme. Some experienced subtle forms of discrimination, such as Renee Wood of Toledo who said, "I wanted to grow, but even in organizations that serve people with disabilities, there is discrimination. I don't think it is done on purpose." Others experienced outright illegal situations. "My employer asked illegal questions. When I informed the director of human resources, he just brushed it off," said Tracy Shoris of Columbus.
Students with disabilities and others provided insight into the problems encountered when transitioning from high school to the workforce. Several stated that to have a successful transition requires a well-planned process that starts years before graduation. "Statistics show that if a person with a disability seeking work upon graduation does not have that job before he or she graduates, that person has only a 20% chance of becoming employed after graduation when the supports are no longer mandatory," said parent Joseph Henn of Macedonia.
Programs of the Bureau of Vocational Rehabilitation (BVR) and the Bureau of Services for the Visually Impaired (BSVI) received mixed reviews. Marty Martinek of Boardman testified that BVR enabled him to get a Master's Degree which he believes helped to "level the playing field." However, Dee Tobias of Coshoctan stated, "Because BVR wouldn't update my equipment, I can't use all of my workspace and my work performance is slower." Many expressed how difficult it is to work with BVR and BSVI counselors.
Another common area of concern is employers discounting college and work experience. Several who testified had earned college degrees and had years of volunteer and work experience, but still found that employers wouldn't look past their disability. "In the individual's mind, we know what we are capable of doing," said Bill Adams of Lucasville. He added, "It (the problem) is convincing others, of giving us a chance, showing them what we can do. People judge on the outward appearance."
Other testimony focused on polices, programs and services of County Boards of Developmental Disabilities and the lack of coordination and cooperation among agencies.
Advice Shared
Many who testified offered motivational suggestions to those seeking employment, particularly on networking and peer support. "Peer support gives you people you can talk to about challenges you are going through," said Mark Seifarth of Columbus. Others shared ideas of alternative ways to find jobs, such as working from home or using the Internet to become self-employed. "It (Internet) can give us our independence," said Greg Powers.
Guide to Improvement
The testimony in the summary will be an important tool in improving employment services and options. Amy Rohling McGee, Executive Assistant for Health & Human Services, who gave opening remarks at the forum, stated that the Forum Summary and the Governor's Employment Survey Report will be used to guide efforts to improve employment services for Ohioans with disabilities. ODDC also intends to share the summary with service providers, legislators, government officials, employers and others.
Employment Forum Recommendations
- Develop transportation resources for people with disabilities, including expansion of the voucher system.
- Provide additional training for job developers and improve job development services.
- Expand BVR's job coaching and follow-up services.
- Strengthen community employment programs and services for individuals in County Board of Developmental Disabilities who don't want to work in sheltered workshops.
- Individualize job placements; don't use "cookie cutter placements"
- Insure that all high school students with disabilities have transition services and that the services begin early enough.
- Increase collaboration and cooperation among service provision agencies.
- Influence employer attitudes and expand employer education and awareness.
- Expand the Disability Navigator program at One-stop Centers.
- Insure that individuals with disabilities have access to peer support during their job searches.
- Train people with disabilities about their rights concerning accessibility, employment and the Americans with Disabilities Act.
Read the Summary of Testimony (PDF file) from the ODDC website. Paper copies of the booklet are available, at no charge, by contacting:
ODDC, 8 E. Long Street, Suite 1200, Columbus, OH 43215, Voice (614) 466-5205 or (800) 766-7426, TTY (614) 644-5530.
The Employment Forum was hosted by ODDC, the Ohio Statewide Independent Living Council and the Ohio Governor's Council on People with Disabilities.
Washington County Honors Advocates
In October, the Washington County Developmental Disabilities Council Center for Public Policy gathered to recognize public officials, disability professionals, community leaders and member self advocates for outstanding leadership in service and public policy in the interest of people with developmental disabilities. The awards ceremony was jointly led by David Long from Washington County and William Peacock, president of the Athens County Center for Public Policy. Dr. Bill Bauer of Marietta College and Marietta Memorial Hospital was the keynote speaker and talked about how people with disabilities can achieve self-determination when they have opportunities to make choices about their lives.
Award Recipients
Six individuals, two local businesses and one organization were honored with plaques. State Senator Jimmy Stewart, 20th District, received the Public Policy Advocacy Award for his longstanding support of legislation important to people with disabilities and for his leadership this year in introducing and passing legislation to remove the words "mental retardation" from state and county agency names. Susan Tilton, Marietta City Commission on Disabilities, was recognized for Community Advocacy. Peoples Bank representative Mary Ann Mitchell accepted the Employer Advocacy Award for her business. Tim Beaver and Nyra Miller, members of the Washington County group, received Self-Advocacy Awards. Myra Harris and the Pioneer Ladies Civitan Club were honored with the People First Award. Two awardees were unable to attend: Cindy Auker of the Traumatic Brain Injury Association was named for Lifetime Achievement and the Marietta Times for Media Advocacy.
The Washington County Center for Public Policy is a public policy project of HAVAR. Inc., a provider of residential and community supports for people with developmental disabilities in Athens and Washington Counties. The project is funded by ODDC. The event was hosted by the Pioneer Ladies Civitan Club in Marietta.
Contact Information
DD Quarterly is produced by the Ohio Legal Rights Service. To share your comments or suggestions about the newsletter, or to sign-up to receive email notification when the DD Quarterly is published, 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
Email: Newsletter@olrs.state.oh.us
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