DD Quarterly Fall 2004
Publication of the Ohio Developmental Disabilities Council bringing disability issues and accomplishments to the attention of Ohioans.
It is the mission of the Ohio Developmental Disabilities Council to create change that improves independence, productivity and inclusion for people with developmental disabilities and their families in community life.
“Hey! Your Tire Is Going Flat!”
Major incremental gains won in decades of struggling to establish values for people with disabilities and their families appear to be eroding seriously in the current political and economic maelstrom. People with disabilities, their families, and their professional allies sometimes had to “take to the streets” in the 1970s, 80s, and 90s to fight hard for advances toward full community inclusion and needed supports and services. Now, the benefits of more than 30 years of serious activism are at risk.
The state budget process is starting. Budgets at all levels have already endured major cuts.
The budget process promises to be contentious and threatening to services and supports for people with disabilities, so their voices and the voices of their allies need to be as clear and resolute and united as they have ever been. We are witnessing an insidious weakening of the hard-fought-for gains as people with disabilities and their families find themselves snared in one of the most negative and controversial political and economic climates ever experienced. Once again, those who will suffer ultimately are those who are most vulnerable in our culture.
A tiny, slow leak in a tire is imperceptible over a short period of time. It is not until someone eventually points out, “Hey! Your tire is going flat!” that we take note of the problem and fix it before it blows out and puts us in real danger on a highway.
Value system endangered
Leaks in our value system for and about people with disabilities are growing. This value system holds people with disabilities in high regard and provides them an entitlement to supports they need to live quality lives in the community. The danger should be evident. We must able to explain to legislators why disability funding is crucial, and why more cuts would be disastrous. Yet we have stakeholder divisiveness and questions of credibility among our ranks. These problems tax the small powers that people with disabilities and their advocates have to influence the budget process and policymakers.
Continued budget cuts have been the order of the day, and nothing seems safe… particularly human services and funding sources established over the past decades to support people with disabilities to remain in and return to their communities. The value of community inclusion swept this nation, and other countries, during the 70s, 80s, and 90s, through the efforts of community integration advocates, service systems and legislatures who were influenced to make changes reflecting community living ideals.
As federal changes took place to support deinstitutionalization, early childhood education and integrated education programs, state and local changes followed suit. These changes did not just happen naturally. Many people literally had to “take to the streets” to demand progress from an often-resistant service system and state and federal legislatures.
Creative financing and Medicaid essential
Creative financing in Ohio through the mixing of local, state, and federal dollars went a long way to increase services and support options to make community living dreams of thousands of people with disabilities a reality. Medicaid funding has been an essential part of making living in the community possible for those who otherwise would have been warehoused or worse.
And now those with disabilities face a complicated and tenuous “redesign” of Medicaid which has caused excessive turf-battling between stakeholders, intensifying the controversy in the budget process. Ohio’s governor now calls Medicaid “The Monster in the Middle of the Road.” The federal Center for Medicare and Medicaid Services (CMS) remains highly suspect of Ohio’s separate county MR/DD service delivery system, demanding amendments that have put on-hold the Residential Facility Waiver conversion to Individual Option Waivers.
Ohio lacks federal compliance
Ohio operates the Community Alternative Funding System under a federally approved state plan, which is implemented through the promulgation of rules. CMS must approve all rules and amendments to the state plan, and CMS has found the state’s reimbursement rules are not federally compliant for a variety of reasons; including reimbursement methods, changes to original amendment, free choice of provider and prior authorization of services, lack of “statewideness,” and the requirement of county board of MR/DD contracts. As the “sides” entrench, and the confusion heightens, the “leaks” in our hard fought-for values and community living mission become more numerous and serious.
Penny tax threatened
The temporary “penny-tax” that has been keeping the budget for people with disabilities from sinking altogether is seriously threatened by those who have something to gain politically by embracing such a “tax cut.” This small tax has been the only reliable source of funding. It would generate a much-needed $1.3 billion through the end of the 2005 fiscal year. But some legislators and state officials are calling for its demise. Another leak in the tire.
Choice hampered by funding
The Martin v. Taft consent order continues to be under attack from those who have misinterpreted the settlement as taking away the choice of people wishing to remain in Intermediate Care Facilities (ICFs/MR). In fact, never before have residents of ICFs/MR and their families had the option to stay or to leave these settings with money that will follow them where they choose to go. But the divisiveness within our own ranks over this issue furthers the confusion for legislators and others responsible for deciding funding levels. So the leaks increase.
Scandals make us look irresponsible
Recent funding scandals at the Ohio Association of County Board of MR/DD have only compounded suspicions of lawmakers and taxpayers, depleting the credibility of those who speak on behalf of people with disabilities and their families about needed funding. Serious questions of accountability make it even more difficult for those responsible for delivery of services and administrative entities to argue that they are good stewards of public monies.
Stay informed and stay united!
What started as a tiny leak in our 30 years of accomplishments has become a potential blow-out. The question: How do we respond to this real and serious threat to all that has been gained? The answer: The same thing we’ve always needed, and that is to understand the facts, and mobilize in a united front! All who sincerely care about needs of people with disabilities and their families must become informed about issues currently threatening their futures. People with disabilities and their allies need to be able to answer questions of lawmakers and policymakers in articulate and confident ways. Perhaps they need to take to the streets again, in large enough numbers to be taken seriously. Their voice must be unified and loud.
Current divisions and turf protection battles between state agencies, advocacy groups, and people with disabilities themselves must give way to the common good. As long as stakeholders continue to huddle in their own self-interested corners, the gains made over the past decades through the sweat, tears, and blood of unified parents, self-advocates and professional allies will be lost. The people we care about, some of Ohio’s most vulnerable citizens, are at serious risk of retreating into a darkness that most thought would never materialize again.
OASP begins statewide relocations in October
The Ohio Access Success Project (OASP) has been developed by the Ohio Department of Job and Family Services (ODJFS) to facilitate the move to a community setting of up to 200 Medicaid-eligible nursing home residents. ODJFS has contracted with Easter Seals of Central and Southeast Ohio to design and implement the program.
The Success Project provides qualified nursing home residents with assistance in making plans to relocate from a nursing home to a community-based setting; assistance with accessing needed community supports and services, such as housing, transportation, financial assistance programs and supportive services; and one time funding of up to $2000 to assist with relocation expenses. These expenses may include, but are not limited to, rental deposits, utility deposits, home modifications and household goods.
After almost a year of planning, the project began in May 2004 in Franklin, Fayette, Delaware and Pickaway counties. Nearly 20 referrals have been received and, to date, four nursing home residents have moved back into the community. These people were linked to needed community services and supports and also will receive follow-up from the Success Project relocation team on a regular basis.
OASP will go statewide in late-October. Four relocation teams will be available to take referrals and work with nursing home residents wanting to relocate. Relocation teams will soon be working in northeast Ohio, northwest Ohio, southwest Ohio and continue in central and southeast Ohio.
The project is serving adults of all ages and disabilities. A 30-year old woman who had been in a nursing home for more than two years was able to move into her own apartment and is looking forward to working part-time. Another nursing home resident who is 88 years old and has been in a nursing home for three years is working with the team and will relocate to the community when accessible, affordable housing can be found.
To be eligible for the Success Project, an individual must have lived in a nursing home for at least 18 months, be Medi-caid eligible and the estimated cost of home and community-based Medicaid services must be no more than 80% of the cost of Medicaid services in the nursing home.
For more information, contact: Laurie Damon, Project Manager at ODJFS, (614) 466-6742. To make a referral to the project, contact : Jeanette Kruty, Relocation Team Leader at Easter Seals, (614) 228-5523.
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.
8 East Long St., Ste. 1200
Columbus, OH 43215
Toll free (800) 766-7426
Voice (614) 466-5205
TTY (614) 644-5530
Fax (614) 466-0298
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.
Abuse and violence: A serious issue, largely ignored
Many people with disabilities depend on others for access to food, medication, finances, personal care, or adaptive equipment for their independence and survival. Sometimes family members, caregivers or personal assistants use power and control negatively and withhold these needs. Sometimes they act violently. The result can cause devastating emotional or medical consequences or even death.
Conference brings awareness to two audiences
On August 16, the AXIS Center for Public Awareness and Ohio’s Domestic Violence and Disability Task Force (DVDTF) sponsored a statewide conference on domestic violence and abuse of people with disabilities. Believed to be the first conference of its kind in Ohio, organizers invited both people with disabilities and professionals. Several survivors shared their stories, and leading professionals guided them and representatives from many agencies toward awareness and information-sharing.
Domestic violence and abuse of people with disabilities gets little attention from most service providers and policy makers. Many deny there is a problem, wondering who would ever do anything so cruel. And although most research on the subject has been with women with disabilities, men also are vulnerable.
“When you close the door to your house, you should be able to feel safe and in control,” said Terri Pease, Ph.D., nationally recognized consultant on topics of abuse and disability. “And you should not have to trade your rights—guaranteed under the Constitution—for services,” she added.
Violence and abuse listed as number one issue
Women with disabilities rated caregiver abuse and domestic violence the number one issue on both rounds of a national Delphi survey conducted by Berkeley Planning Associates in 1996.
In a 1992 survey by the Center for Research on Women with Disabilities, 62% of women with physical disabilities had experienced abuse at some time during their life, and 13% had experienced physical or sexual abuse during the year prior to the survey. Women with disabilities reported being abused by spouses, live-in partners, other family members, people they were dating, health care professionals, and personal attendants.
Victims fear losing independence
Often, people with disabilities fear reporting a problem because they rely on the person abusing them for personal assistance or financial support. They fear losing their independence if they can’t find a replacement for the abusive care provider.
And, as women’s studies have shown, women who seek help from a domestic violence shelter often encounter barriers that people without disabilities do not. Often the facility is not accessible, they may not have transportation to get to the shelter, interpreters may not be available, and sometimes they have trouble obtaining a personal assistant while they are in the shelter. They may lose assistive devices and medications because they leave home quickly in a crisis.
Issue takes many forms
Abuse and violence toward people with disabilities can take many forms. Here are some examples:
- A woman lives in a group home. She is raped and spends each day terrified because she has to live next door to the perpetrator. She is told that’s the way it is, “because he’s a consumer, too.”
- A man with quadriplegia uses a stamp for his signature because he cannot write his name. A personal care assistant cashes and uses the man’s Social Security Disability Income check using the stamp.
- A man’s assistant gives him aspirin to replace his prescribed medication that she has stolen.
- A woman who is non-verbal and has other disabilities lies in bed all day waiting on her attendant to show up.
- A spouse uses threat or intimidation to get what she wants, reminding the person with the disability, “I can beat you like I did before.”
- A husband refuses to make a bathroom accessible and takes away his wife’s wheelchair when he leaves the house so that she can’t go anywhere.
- A woman’s spouse hits her and says later, “I’m sorry you made me so mad.” [Translation: It’s your fault I got angry.]
- A man’s personal assistant often doesn’t show up. The personal assistant reports to his agency that the client is a chronic complainer and the home is unsafe. The agency is reluctant to assign a new assistant quickly.
- A young woman in a nursing home is afraid of the staff that care for her. They take away her snacks and tell her she cannot leave her room.
- The only way a woman can see her children is to remain with her abusive husband. She is blind. Eventually, when the situation escalates to extreme danger, she leaves her husband and family because she finally has a job and doesn’t have to rely on him for income. However, her children feel she’s abandoned them.
- A child who is deaf is part of a family of people who hear. Communication is difficult. The boy’s parents hit him to show him when he misbehaves or to get his attention.
Obvious need for solutions
The large turnout for “A Meeting of Minds,” the title of the conference, and requests for additional resources point out the need for continued work on these issues.
The AXIS Center, a project of the Ohio DD Council, and DVDTF invited guests of the conference to join in planning and implementing activity that will spread the word, increase networking, and develop resources to help eliminate this significant problem of abuse and violence of people with disabilities.
For more information about how you can get involved in this statewide effort, contact: Louise Fisher, (614) 876-7090, firstname.lastname@example.org
New ADA and ABA access standards in the making
Standards for accessibility used to enforce the Americans with Disabilities Act (ADA) of 1990 and the Architectural Barriers Act (ABA) of 1968 are adopted by the U.S. Department of Justice (DOJ). The DOJ is now accepting comments on the most recent proposed changes—158 of them—made by the U.S. Access Board. The Access Board creates the guidelines for DOJ to address and make into standards.
Current accessibility standards remain in effect until the DOJ finalizes the new standards.
New guidelines give consistency, reflect coordination
The ABA requires access to facilities designed, built, altered, or leased with federal funds. Under the new guidelines, the ABA and ADA requirements will be more consistent with each other. It also will be easier to review differences, according to which standard is used. The Access Board says the guideline revisions also were made, in part, to keep pace with technological innovations.
“These guidelines are our guarantee that when a building is built or renovated anywhere in the nation, its doors are wide open to our citizens with disabilities,” said Jan Tuck, vice chair of the board.
The new guidelines end a decade-long comprehensive review of the board’s ADA Accessibility Guidelines, first published in 1991. During the review, the board coordinated extensively with organizations providing industry standards, such as those through the American National Standards Institute, and model building codes, such as the International Building Code. The thinking was that the coordination will pay off with better compliance.
The board’s guidelines are a baseline for DOJ to use in creating its standards. DOJ’s standards must be consistent with the board’s guidelines.
The board received some 2,500 individual comments about the guidelines. If you provided comments on the proposed guidelines to the Access Board, you can still give comments to the DOJ about the same topic, especially if you think the guidelines don’t reflect your views.
Perhaps some controversy
Two of what may prove to be the most controversial of the new guidelines are:
- A reduction of wheelchair seating positions in auditoriums and other public assembly areas, and
- A lessening of required physical accessibility in jails and penal institutions.
To read the board’s new guidelines, visit: http://www. access-board.gov/ada-aba.htm.
What the DOJ wants
In its request for comments (called an ANPR, or advance notice of proposed rulemaking), the DOJ:
- Asks for input about various application issues, such as how much lead time the DOJ should provide before the updated standards take effect.
- Discusses issues about existing facilities that are subject to DOJ regulations but not thoroughly addressed in the board’s guidelines.
- Discusses specific issues about certain types of facilities and equipment, miscellaneous matters, such as the DOJ process for certifying state and local codes under the ADA, and information for its use in developing a regulatory impact analysis.
The process in review
Once the January 28 comment deadline is reached, the DOJ will propose a follow-up version that also will be made available for public comment before it is finalized. So here’s how the whole process works:
- The U.S. Access Board, after a 10-year review with input from industry, organizations, and individuals, created new guidelines for access.
- On July 23, 2004, the board recommended these new guidelines for adoption by the U.S. Department of Justice as standards to use in enforcement of the Americans with Disabilities Act and Architectural Barriers Act.
- The U.S. Department of Justice issued an advance notice of proposed rulemaking on September 30, 2004, concerning setting or updating its current standards of access. Its deadline for comments is January 28, 2005.
- After the deadline, the Department of Justice will propose a follow-up version of the guidelines.
- The Department of Justice will then ask for comments on its revised guidelines.
- Then the Department of Justice will issue new standards for access. Until this happens, the current standards remain in effect.
DOJ’s deadline for accepting comments on the announce-ment of proposed rulemaking is January 28, 2005. To find instructions for how to comment, visit DOJ’s website: www.ada.gov/proposal.htm. Address questions to the DOJ at (800) 514-0301v, or (800) 514-0383 tty.
About the Access Board
The Department of Justice is asking for comments on new accessibility guidelines from a group called the U.S. Access Board. What is this board, and why does it pack such a wallop?
The U.S. Access Board’s full name is the Architectural and Transportation Barriers Compliance Board, and it creates guidelines for architecture and transportation related to the Americans with Disabilities Act (ADA). The Access Board consists of 13 public members appointed by the President, of whom a majority must be people with disabilities, and 12 federal agencies, among which are the Department of Justice and Department of Transportation.
The ADA requires the Access Board to “issue minimum guidelines…to ensure that buildings, facilities, rail passenger cars, and vehicles are accessible, in terms of architecture and design, transportation, and communication, to individuals with disabilities.”
OPI announces poster contest
Ohio Public Images and the Ohio Developmental Disabilities Council are again this year sponsoring a poster contest for all elementary school students in Ohio. Theme of the contest is Friendship Makes Abilities Bloom!
Students are asked to create posters that explore the similarities in children, both with and without disabilities, in a positive way.
Students with winning posters will receive U.S. Savings Bonds. their posters will be displayed in the Ohio Statehouse.
For a packet of information for your school, call (419) 254-4069 and ask for Mary Pat. Or visit: www.publicimagesnetwork.org
Cuyahoga Special Education Service Center
Leadership Development Series
In collaboration with CMR, Inc., East Shore SERRC, Ohio Coalition for the Education of Children with Disabilities, and the Ohio Developmental Disabilities Council
Getting to Win-Win
Friday, April 8, 2005
9:30 am – 2 pm
Broadview Heights, OH
Robert “Bobby” Silverstein, Director
Center for the Study and Advancement
of Disability Policy, Washington, DC
Part of successful school/home/community partnerships is based on communication and the ability to move the process forward. Silverstein brings years of experience to the table regarding collaboration and negotiation.
Participants will have a better understanding of:
- Best practice in negotiation skills development
- The top ten tips in working on disability issues collaboratively
- Using emerging disability policy to navigate the issues
Reservations required. Fee: $15, includes lunch and materials. For more information, contact: Terri Mc Intee, CSESC, (440) 885-2685, ext. 236 or Terri.McIntee@LNOCA.org
Two programs expand college and career opportunities for students with disabilities
WrightChoice links college students to internships
The WrightChoice Intern Program (WCIP) led its second annual college visit to Wright State University (WSU), Dayton, July 28 to give students and parents a firsthand look at college life and opportunities.
The program is partially funded by the Ohio DD Council, said TyKiah Wright, WCIP executive director and founder. Based in Columbus and known for “building a bridge between resource and opportunity,” WCIP links college students with disabilities and minority students to internship possibilities. The program is in its third year of operation.
“Our goal is to expose students to different types of opportunities, especially at the collegiate level,” said Wright, a graduate of WSU.
“A lot of students with disabilities don’t ever have the opportunity to be exposed to college life or post-secondary education,” said Wright. “After high school, they fall through the cracks of society and don’t reach their full potential.”
This year, 15 students along with 14 parents made the trip, and it’s that parent-child link that makes the visits so successful. “A lot of times, parents are not invited, but we invite them because often there is a lack of awareness on the part of the parents. Once they come on the trip, they do become aware and they can then provide that extra support and encouragement to their child.”
Christina Poole, a Special Edu-cation teacher in the Westerville School District, said, “I certainly will encourage my students to go on these trips.” Poole took the trip with son, Allan Russell, a student at Beechcroft High School. “I thought it was a wonderful thing to do together,” she said.
LaQuashia Brown, who does not have a disability, was impressed with the campus. “WSU focuses on everyone—those with and without disabilities. I like a school that is concerned with everybody, she said.”
Brandi Brown, who accompanied her granddaughter on the trip, agrees. “I was impressed.”
She added that several of the guest speakers had some of the same disabilities as the visiting students, which seemed to be helpful. “We came away with a lot of information. I would definitely tell others about this trip.”
The group traveled by bus, leaving Columbus early in the morning. They returned after a day of hearing guest speakers from WSU talk about Admissions, Financial Aid, Disability Services, Academic and Vocational Support, Student Life, Adapted Recreation, as well as the cultural organizations the campus offer its students.
Cassandra Mitchell, WSU Academic Support Services specialist, is pleased with the WrightChoice visits. “The students seem to have very good questions about what they need to be doing now to prepare for college,” Mitchell said. “We want to continue to work with this program.”
“I'm gratified to know that because of something we put together, we changed a student’s life,” Wright said. “If I’ve just played the role of exposing a student to college possibilities, then I have done my job.”
In the future, Wright said the college visit may be expanded to include an overnight stay at a university. “It would be nice to add a two- or three-day, multiple college tour where we just get on the bus and go.”
High School High Tech encourages technology careers
High School High Tech (HSHT), a federal program through the U.S. Department of Labor, Office of Disability Employment Policy, brings career and college options to high school students with disabilities in Ohio.
TyKiah Wright, HSHT statewide coordinator, said more awareness of the program is important. “We’re looking to increase the visibility of the HSHT program on a statewide level and expand the program,” she said. Wright said she would like to see the program reach into all areas in the state.
The program, that currently operates in Toledo, Cleveland, Cincinnati and Columbus, was designed with four features:
- Preparatory Experiences include work readiness skills, jobsite visits, trainings such as for resume writing, interview skills, and college visits.
- Connecting Activities offer tutoring, assistive technology, and mentoring to facilitate the students’ transition to a work or study situation.
- Youth Development & Leadership features activities such as self-advocacy, self-determination, and independent living skills.
- Work-based Experiences include on-the-job activities such as job shadowing and visits, as well as internship opportunities.
Currently, more than 90 students are being served in Ohio through the program, but that is expected to jump to more than 100 with the recent launching of a new HSHT site in Columbus.
Columbus’ HSHT Director Jackie Kemp is gearing up for a full-range of activities to support today’s high school students with disabilities who have yet to be exposed to high tech studies and careers. “It will mean an opportunity and advantage to explore college and career choices,” Kemp said. She has garnered support for the program from the Columbus Public Schools, as well as The Ohio State University.
HSHT allows students to “explore education and careers that wouldn’t have been available to them,” said Jennifer Jones, Dayton’s director. “Technology is everywhere around us.”
In Toledo, HSHT Director Kim Dittman cited numerous ongoing projects such as job shadowing, and mentoring, and the TECH-Now curriculum that facilitates skill-building through computer software and hardware use.
Dittman also said a HSHT partnership with the University of Toledo’s Engineering Department looks to result in senior design projects such as an accessible fishing boat; camera stand adaptation; a lift to transport a wheelchair from trunk to car; and ergonomic extenders for wheelchairs.
Lucille Walls, executive director of the Ohio Governor’s Council on People with Disabili-ties, which fiscally oversees the program, said the hopes for Ohio HSHT are that it can pattern after the Florida program, which is heavily linked with business and universities and has enjoyed a strong and continued growth.
For more information about these programs, contact: WrightChoice Intern Program, 690 South High St., Columbus, OH 43206; (614) 444-8300 v; (614) 443-5954 fax; www.wrightchoice.org; or email@example.com
Medicaid Buy-in program making progress in Ohio
Since passage of the Ticket to Work and Work Incentives Improvement Act in December 1999, advocates have promoted Medicaid Buy-in in Ohio. A total of 25 states have already implemented this program to enhance opportunities for people with disabilities to work and maintain their Medicaid coverage.
In March 2001 a joint Ohio House/Senate committee made recommendations to implement Medicaid Buy-In in Ohio. Their recommendations would have:
- Eliminated Medicaid “spenddown” for people with disabilities who are working;
- Increased asset limits from $1,500 to $10,000; and
- Permitted workers to remain in Medicaid up to 250% of poverty level (about $23,000 per year), after excluding the first $20,000 in earned income.
That committee was chaired by Senator Bill Harris of Ashland who will likely be selected as the President of the Ohio Senate when the new General Assembly convenes in January. Harris is chair of the Senate Finance Committee.
Will MBI be in next budget proposal?
At the time Senator Harris’s committee made those recommendations to the governor and Ohio General Assembly, the state was in a budget crisis. Rising Medicaid costs precluded support for implementation. The current two-year budget also didn’t include Medicaid Buy-In. However, a new budget will be introduced in the General Assembly early in 2005. The governor included the buy-in program as a priority in the Ohio Access Report for People with Disabilities last spring, so advocates are hopeful that the he will keep that commitment and include buy-in as a priority in the next budget.
Projections of participants and dollars
Recently Steve Howe, of Steven R. Howe Associates, prepared revised estimates of the costs of implementing a Medicaid Buy-in program for Ohio. The Ohio Developmental Disabilities Council commissioned this study. Howe also did the original estimates for the Ticket to Work Study Committee chaired by Sen. Bill Harris in 2001.
Current estimates are that about 7,000 Ohioans would likely participate in a buy-in program, although it would be 4-5 years to enroll that many people. Costs at that point would be about $14 million per year.
Howe’s estimates were presented this summer to the Ohio Commission to Reform Medicaid. Commissioner John Begala included that in his preliminary report to the Commission on September 13.
Possible bipartisan bill to come
Also, Senator Eric Fingerhut’s office has been working with members of the Disability Policy Coalition to develop legislation to implement Buy-In. A draft bill has been in process at the Legislative Services Commission, and may be introduced by bipartisan sponsors after the November election.
Updated MBI report available
People with disabilities often are discouraged from working because increasing their earnings makes them ineligible for Medicaid and the coverage they need for acute and long-term support services. People are forced to choose between health insurance and work.
In order to keep their Medicaid eligibility, these people may stop working or reduce their work hours because they cannot afford to pay for all their medical services. Having a Medicaid Buy-In (MBI) program in Ohio could reduce the unemployment rate among people with disabilities by 70%.
With the Buy-In, a person pays a premium for coverage; the size of the premium is based on the amount of the person’s income.
The Ohio DD Council— that supports Medicaid Buy-In because it enables more people with disabilities to go to work—commissioned a report on the cost and enrollment of a MBI pro-gram in Ohio.
Dr. Steven Howe, who specializes in Evaluation, Policy and Program Planning at the University of Cincinnati, recently completed the report, titled “Thinking about Medicaid Buy-In Enrollment projections for Ohio: Learning from other States.”
For a copy of the report, phone: (800) 766-7426 v or (614) 466-.0298 fax, (614) 644-5530 tty, or visit: www.ddc.ohio.gov/Pub/
Cleveland resident wins Helsel award
Walter I. Zborowsky of Cleveland, Ohio, was recently selected as the recipient of the Elsie D. Helsel Advocacy Award. The award, including a cash award, is given annually by the Ohio Developmental Disabilities Council for outstanding advocacy on behalf of people with developmental disabilities. Elsie Helsel of Athens, is a long-time advocate for people with disabilities on both state and national levels.
Zborowsky distinguished himself with his advocacy efforts on state and local levels. On the state level, he became a formidable advocate because he made himself an expert in complex areas such as Medicaid, Housing and Urban Development (HUD), residential funding and legislation. And if policymakers tried to ignore him, he did not hesitate to pursue litigation. He was also a major architect of reform legislation that enacted the Ohio Bill of Rights for people with mental retardation and other developmental disabilities. He has testified before legislative committees at state and national levels.
His local efforts have had a major impact in the lives of hundreds of people with mental retardation and other developmental disabilities in the Cuyahoga County Community. He developed and operated homes for people with disabilities and provided training programs to allow more people with disabilities to live independently. Additionally, he has trained future professionals as a faculty member at Cleveland State University.
The honoree of this annual award was announced by Mar-garet Gutsell, Vice-chair of the Ohio Developmental Disabilities Council at the Annual Confer-ence, September 8 in Columbus.
Gardner and Ney named Legislators of the Year
Coinciding with DD Council’s commitment to getting out the vote of people with disabilities—and the theme of its 2005 Annual Conference, “Change Our World...Vote!”—Council honored U.S. Representative Bob Ney, Bellaire, and Ohio Senator Randall Gardner, Bowling Green, as Legislators of the Year.
Ney was selected for his outstanding efforts to support people with disabilities through passage of the HelpAmerica Vote Act (HAVA). Patrick Sweeney, Cleveland, accepted the award on Ney’s behalf.
Senator Gardner was honored for appreciation of his dedicated efforts to improve the lives of people with disabilities by reforming Ohio’s election process. Gardner chaired the 2004 Joint Committee on Ballot Security.
YLF Class of 2004 learns about legislative process
The 2004 delegates to Ohio’s Youth leadership Forum (YLF) plus assistants, counselors and staff (pictured above) visited the Ohio Statehouse to learn about the legislative process, hear from policymakers, and visit their representatives. The 28 high-school students who attended the four-day event had an opportunity to develop and enhance their leadership and advocacy skills by interacting with peers and speakers. For more information about this annual forum, visit: www.gcpd.ohio.gov
Forum inspires Brianne Clink
Brianne Clink of Custar, OH, near Bowling Green, is an alumna of one of the most touted forums in Ohio for high school students with disabilities. She was a delegate to the first Youth Leadership Forum (YLF) in 1999, sponsored by the Governor’s Council on People with Disabilities and a project of the Ohio DD Council. Since that time, YLF has prospered. And Clink has not only returned each year to help but has applied the forum’s leadership lessons to her life.
Leslie Alloway, program specialist at Governor’s Council, said, “The best gift we give YLF delegates is one another.” She said the forum has fostered many lasting friendships and stressed the delight delegates typically feel that they are at a worthwhile event where they are not the oddball. Alloway said the forum is a mixture of learning and fun in small and large groups. Guest speakers are community leaders and celebrities.
Several delegates return to work as staff. In 2004 Clink completed her second year as a small group counselor. “Each year I get another shot in the arm,” she said.
Today, she is “thinking big” in her leadership thoughts, and as she works to complete college, she’s also considering positions where she might continue to make a difference, such as applying to serve on Governor’s Council.
She will finish her studies in December at the College of Mount Saint Joseph in Cincinnati. She said she decided to try to become a special education teacher because of encouragement from her high school guidance counselor. “My counselor told me there were ways to overcome obstacles, and I didn’t always believe her,” she said.
Clink said her experience at the Youth Leadership Forum gave her an enormous boost of self-confidence that she really could achieve that goal and many others. She’s been on the dean’s list several times. This fall, she’s student teaching and is thinking about employment opportunities “anywhere in Ohio.” She said, “I would love to be an intervention specialist in a high school.”
She’s gone from doubter to believer. And her transformation shows the value of positive life influences—such as those gained at YLF.
She represents one of many positive stories from past forum delegates. You don’t have to go far to find another. For example, the Governor’s Council website features several photos from past forums. And it’s no coincidence that a 2003 forum alumni, B.J. Kline, is the site’s webmaster.
If you want to apply to become a delegate for the seventh Youth Leadership Forum, June 20-23, 2005, in Columbus, visit the Governor’s Council website: www.gcpd.ohio.gov for an application.
Deadline for applications is January 14, 2005. Applicants must be juniors or seniors in high school as of Dec. 31, 2004, in order to attend the 2005 forum.
You may contact Brianne Clink by e-mail at firstname.lastname@example.org
The 4th Annual National Inclusive Schools Week will be celebrated December 6-10, 2004 in classrooms, schools and communities throughout the country. The event recognizes the nation’s progress and promotes action toward increasing the capacity of schools and communities to provide a quality education to an increasingly diverse student population, particularly those who have disabilities.
For more information, visit: www.inclusiveschools.org
Doris Brennan Center opens in Cleveland
To commemorate the independent living work of one of its early pioneers, Linking Employment, Abilities and Potential (LEAP) opened the Doris Brennan Center for Disability Education and Advocacy (DBC) named for the woman who led LEAP as its executive director for 14 years. The DBC opened July 1, 2004.
Brennan, who had quadriplegia following a 1954 auto accident, died in 2000. Her words live on today to inspire people with and without disabilities: “Once a person truly understands that his or her voice and opinion mean something and can bring about change, that knowledge instills a sense of power and confidence that cannot and will not be squelched. Training individuals to take on the role of future leaders and instilling the sense of empowerment is the greatest reward one can achieve.”
Melanie Hogan, LEAP executive director, said Brennan’s quotation sets the tone for what the new center seeks to achieve. The DBC, which operates out of LEAPs main office, focuses on community and system advocacy to advance dignity, equality, self-determination and expressed choices of individuals with disabilities.
DBC projects also will:
- Advocate for and promote changes in legislation and policies for the full inclusion of people with disabilities in all aspects of community life.
- Include disability awareness, sensitivity training, and education of the general public.
Hogan said, “Doris’ advocacy efforts on behalf of her peers instilled validations of self worth in countless individuals and helped dispel myths and stereotypes of disability that limit people to a much greater degree than their disability ever could.”
Alma Krekus, DBC director, said “Everything about this work exudes ‘Doris’ because she mentored all of us for many years.”
For more information, contact: Alma Krekus at LEAP, 1468 W. 25th St., Cleveland, OH 44113; (216) 696-2716 v; (216) 696-3317 fax, or e-mail: akrekus@leapinfo
Arts Grants announced by DD Council
The Ohio Developmental Disabilities Council awarded Funding for the Arts grants to eight Ohio organizations:
- Art on Main, Lawnview Industries, Urbana;
- Artists Open Studio, Christie Lane School & Workshop/ Huron County Board of MRDD, Norwalk;
- We Care Arts, Kettering;
- Gallery Arts Center, Columbus;
- Joining the Arts Community, Tuscarawas County Board of MR/DD, New Philadelphia;
- Art Bridge Studio, a Division of UCP, Columbus;
- The Purple Cat, Youngstown;
- Hocking County Board of MR/DD, Logan.
DD Council awarded a total of $32,000 in arts grants. This is the second year the Council has offered Funding for the Arts to help emerging artists with disabilities move to a higher level of career development. Grant funds will be used to help artists with disabilities develop the skills necessary to begin marketing their art for profit. The recipients of the awards will assist artists with disabilities in a variety of artistic disciplines.
The community employment rate for people with disabilities is devastatingly low, as is the involvement of people with disabilities in the arts. The arts can provide opportunities for people to be employed in a variety of nontraditional careers. However, people with disabilities are rarely given the opportunity to explore this area as a career option.
Art entries and site proposals sought
The 2005 touring Accessible Expressions Exhibition show-cases art of professional, emerging and youth artists with disabilities in Ohio. Artists wanting consideration of their work need to submit photos of the art along with an entry form by December 17. VSA will notify artists by January 7, 2005, whether their artwork has been chosen for exhibition. There is a nominal entry fee. Prizes are awarded. The exhibit encourages sale of the displayed works.
The exhibition opens at Xavier University on February 12, 2005. VSA Arts of Ohio wants the exhibit to be available in all Ohio regions and seeks additional proposed accessible locations. The 2004 show opened at Xavier University and visited 12 other sites. Examples of past sites are the Dayton Art Institute, Avon Public Library, Westerville Recreation Center, and Beck Center for the Arts.
The exhibition is in its ninth year and is one of VSA Arts of Ohio’s most popular programs, with an estimated audience of more than 100,000.
VSA Arts of Ohio is a nonprofit arts service organization promoting the creative power of people with disabilities in Ohio. KeyBank is the primary sponsor for the Accessible Expressions Ohio exhibition.
Obtain site requirements, art entry forms and rules from Kimberly Murray, VSA Arts of Ohio, 77 S. High St., 2nd floor, Columbus, OH 43215, (614) 241-5325, email@example.com.
News from Ohio Legal Rights Service (OLRS)
Ohio Legal Rights Service
8 E. Long St., Suite 500
Columbus, OH 43215-2999
TTY toll-free: 1-800-858-3542
TTY local: 1-614-728-2553
Controversy in Compromise: Ohio’s Long Term Care industry and the Martin v Taft Settlement
Michael Kirkman, J.D., OLRS Legal Director
Controversy and conflict continue to slow the efforts of people with mental retardation and developmental disabilities (MR/DD) in Ohio to obtain the promise of community integration that is offered by the Americans with Disabilities Act of 1990 (ADA). The parties in the OLRS case of Martin v Taft, filed in 1989, have arrived at a court mediated settlement that would set the stage for one of the largest waivers requiring the money for services to follow the person in the United States. The United States Secretary of Health and Human Services Tommy Thompson called for states to seek new waivers that allow people with disabilities to have control of the Medicaid dollars used to serve them.
The settlement was drafted into the terms of an enforceable consent order and filed with the Court on June 29, 2004. The Court issued preliminary approval of the consent order on July 7, 2004, and set September 14, 2004, as the date for the fairness hearing required by federal court rules.
The settlement would provide current and future residents of an ICF/MR in Ohio the choice between moving to an integrated community setting or remaining in the facility where they currently reside—with payment for services in either setting funded by a research and demonstration waiver. Almost one billion dollars in Medicaid money was paid to ICFs/MR in Ohio in FY 2003, and this money would be used to fund the services based on that choice.
Ohio’s long term care industry quickly demonstrated, however, that it would not support a proposal that would diminish their control over these dollars. Through a well-orchestrated campaign, the industry and their lawyers sought to convince aging parents and guardians of Martin class members that the settlement would result in the closure of licensed ICF/MR facilities in Ohio and that the settlement would put the families’ loved ones on the street. Nothing in the settlement does this.
Combating these misrepre-sentations, OLRS’ lawyers and advocates have attended forums, talked to hundreds of class members and guardians, and, along with the state defendants, provided to the court and the class additional clarification assuring continuity and adequacy ofservices.
The Settlement and the ICF/MR program
Those individuals who are objecting to the settlement have focused on their desire to continue participation in the ICF/MR service under Medicaid. Federal Medicaid law specifies that a participating state must provide “at least” certain services to all eligible participants, including:
- Inpatient and outpatient hospital services;
- Laboratory services;
- Nursing facility services;
- Physician services; and
- Nurse midwife and nurse practitioners.
A state also may choose to offer additional services as part of its plan. Although not mandated to do so, Ohio currently includes ICF/MR services in its plan.
Under the relevant federal law, however, Ohio may drop the ICF/MR service from its plan at any time. Courts have consistently held that a state may choose not to offer the ICF/MR service.
The state attempted this in the 2004-2005 biennial executive budget, but this effort was rejected by the Ohio General Assembly. Ohio Medicaid officials have been clear, however, both in the context of the Martin case and in public venues such as the February 2004 Ohio Access report update, that this proposal will be in the executive budget in 2005 (state FY 2006-2007).
It was in this context that the consent order was negotiated. The provisions of the proposed consent order:
- Recognizes the state’s plan to drop ICF/MR services;
- Mandates that in its place the state create a waiver that would provide comparable services to the class members currently residing in ICFs/MR;
- Mandates that the state defendants develop the waiver in a manner that allows the class member resident to choose the provider of services and to choose the place where the services are received (including a non facility setting); and
- Provides monitoring and enforcement mechanisms for the class to ensure that reasonable steps are taken by the defendants to comply with these provisions.
The settlement also sets up short term priorities for ICF/MR residents within existing waivers, and mandates necessary rules to enforce a statutory waiver priority for residents of nursing facilities who have MR/DD.
Points of clarification
Many individuals reacted to news of the settlement with distrust of state officials because of past failures regarding people with MR/DD. OLRS has emphasized that the settlement is a consent order that would be enforced by the court, and that the monitoring and enforcement provisions were included in order to assure compliance.
Additionally, the state defendants and the plaintiff class, represented by OLRS, have provided in writing several points of clarification that would bind the state defendants in their interpretation of the order. These include assurances that:
- Comparable services would continue uninterrupted;
- A mechanism to cover room and board would be included in any waiver submitted by the state;
- Licensed facilities will continue to be a choice for the class, and the state will continue be a provider of services for developmental centers;
- Due process rights would be assured to the class; and
- The resources currently used in the ICF/MR system would be used to fund the waiver.
Furthermore, the parties to the consent order agreed that the waiver would be phased in incrementally. A select number of facilities will be selected to implement the conversion to the waiver. This will allow for evaluation and adjustments to be made before taking the waiver state wide.
During the objection period, the court received over 5600 documents that were docketed as “objections.” Review of these documents showed over 3700 of them, or 8 in 10, were on forms created by the ICF/MR industry. Only 592 were identified as from parents. Much duplication occurred, with 27 objections filed on behalf of one class member, and one parent having eight different documents filed as separate objections.
Several groups of objectors represented by lawyers filed objections and announced their intention to participate in the fairness hearing. After a pre-trial hearing and brief mediation session, the court cancelled the September 14 fairness hearing and ordered an exchange of proposals between the signatory parties and the objectors. This exchange now has taken place and the Court will set a status conference to discuss the next steps regarding the consent order.
Two separate motions to decertify the class have been filed by objectors. Plaintiffs have opposed these motions, since the class is properly composed of individuals who will benefit from the choice provision of the proposed consent decree, implementing the state’s obligation under the community integration mandate of the ADA. If the class is decertified, then the settlement will be void, and the named plaintiffs’ claims will be resolved either through settlement or trial.
If the class remains certified, the Court must approve or disapprove the settlement; it cannot modify the agreement. If the Court does not approve the settlement, the case will be set for trial. OLRS lawyers will be asking the Court for a prompt ruling on these motions, as this will allow the case to be settled or taken to trial if necessary.
Frederick Douglass is thought to have said: “Power concedes nothing without a demand; it never did and never will.” The reaction of the long term care industry to the settlement in Martin demonstrates this point once again.
Yet the settlement is but one step in the direction of giving control over services to the people with disabilities who use them, and Ohio has many more steps to take. OLRS is committed to this issue, and will continue to press Ohio officials to move in the direction of client choice and an integrated service system for all people with disabilities.
OLRS awarded federal grant to plan one-stop centers for families
The Administration on Developmental Disabilities (ADD) recently awarded a one-year Family Support 360 planning grant to OLRS. Through the Projects of National Significance grant program, ADD awarded these grants to plan multi-agency partnerships that will design one-stop centers to assist unserved and under- served families with a member who has a developmental disability. The main purpose of the one-stop centers is to preserve, strengthen, and maintain the family unit.
Families of children with disabilities is focus
OLRS will use the grant’s planning dollars to work with families who have children with disabilities, the Hamilton County Board of MRDD, The ARC of Hamilton County, and the Ohio Department of MRDD on the three tracks of the grant:
- OLRS will work with families who have children with disabilities to plan a local single point of entry so they have access to a system of family support services that is family-centered and family-directed.
- OLRS will work with families who have children with disabilities to identify what information they need, to develop useable information in readily understood language, and to plan outreach and ways to circulate information.
- OLRS will explore information technology that supports the family group’s plan for a local single point of entry. Based on the plan, OLRS will develop a Requirements Document addressing the plan and associated costs of implementation should funding for implementation become available.
Project builds on FSC grant/H.B. 214
OLRS brings to the Family Support 360 planning grant six years of work advocating for a single point of entry, and family-controlled, family-determined supports for Ohio families who have children with disabilities through its Family Support Collaborative (FSC). FSC is funded by the Ohio Developmental Disabilities Council (ODDC).
One of the products of the FSC grant was House Bill 214, which would have established a simple, streamlined application/eligibility process and create a single point of entry to find out about, apply for, and evaluate supports. H.B. 214 did not come to a vote before the House recessed this past summer.
FS Council is alternative
However, the Director of the Ohio Department of MRDD Kenneth Ritchey, on behalf of the Taft Administration, offered an alternative to H.B. 214: establishing a Family Support Council within ODMRDD. The Council is a shared initiative among the FSC, OLRS, ODMRDD and ODDC that is now actively working toward implementing many of the provisions contained in H.B. 214 that ODMRDD has within its power to change. Some of the provisions of the bill require collaboration among many of the state agencies providing services for families who have children with disabilities, for example, the departments of Job and Family Services, Health and Mental Health.
The FS 360 grant offers an opportunity to work on needed collaboration at a local level. OLRS is excited by the possibilities this new grant affords to build on the work of the FSC and the FS Council. We look forward to working this year with Hamilton County families and its Board of MRDD, The ARC of Hamilton County, and ODMRDD to plan a local single point of entry.
OLRS program priorities: Guiding what we do
Ohio Legal Rights Service accepts thousands of cases each year. Case selection is guided by express agency program priorities in order to accomplish the mandated goals and objectives of the three main federal protection and advocacy programs: the Protection and Advocacy for Individual Rights (PAIR), Protection and Advocacy for Developmental Disabilities (PADD) and Protection and Advocacy for Individuals with Mental Illness (PAIMI). Most importantly, case selection is designed and implemented to assure consistency and fairness in the evaluation and assignment or rejection of cases.
During the past year Ohio Legal Rights Service has made significant improvements to its intake system, including linking accepted cases with program priorities. This powerful tracking tool allows continuous monitoring of and adjustments in case selection, evaluation of goal accomplishment, and efficient quarterly and annual reporting to federal program administrators.
Program priorities are developed through an ongoing pro-cess throughout the year. OLRS invites and values public input into the formulation of program priorities through public forums, through paper and online surveys, and personally through advocates and attorneys assigned to individual casework.
Ohio Legal Rights Service has completed its new program priorities, rationales and activities to achieve the priorities for the next fiscal year, October 1, 2004 to September 30, 2005. The new program priorities were submitted to the OLRS Commission for review on October 4 and presented for review and comment in public forum on October 13.
Summary of priorities
A summary of the themes of the 2004-05 program priorities follows. Each priority is supported by a rationale and activities planned for the new fiscal year in order to accomplish each program priority.
- To protect and advocate for the Olmstead rights of people with disabilities to live in integrated community settings of their choice.
- To protect and advocate the rights of eligible children with disabilities to receive special education in the most integrated setting appropriate to their needs and to remain with their families and in their communities.
- To protect and advocate the rights of people with disabilities subjected to discrimination, abuse and neglect, seclusion and restraint, and inadequate institutional health and safety standards.
- To advocate for improved performance and accountability of the client rights advocacy system in Ohio and accommodations in services to people who are deaf or hard of hearing.
- To protect and advocate for OLRS’ continued access to records, clients and facilities as provided by federal and state laws.
Ohio Legal Rights Service program priorities are available in print upon request and on the OLRS web site: http://olrs.ohio.gov/ASP/about_Priorities.asp
Court issues opinion on Medicaid eligible children
On August 28, 2003, Ohio Legal Rights Service filed a complaint in the United States District Court for declaratory and injunctive relief against the Director of the Ohio Department of Job and Family Services (ODJFS), Thomas J. Hayes, for failing to ensure that Medicaid eligible children under the age of 21 receive appropriate treatment under the Early, Periodic, Screening, Diagnosis and Treatment (EPSDT) provisions in the Medicaid Act—even if the necessary treatment or service is not covered under the State’s Medicaid plan.
ODJFS is required under the Medicaid Act to screen all Medicaid eligible children and provide or arrange for the services and treatment they may need to correct any developmental, mental, and physical conditions that are found in the screenings. OLRS filed this suit on behalf of two children who were not receiving the medically necessary treatment and services they required to deal with their developmental and other health conditions.
The complaint alleged that the director of ODJFS failed to have policies, practices and procedures in place to make sure that all eligible children and their health- care providers were aware of the services available under EPSDT and had an effective means for families to obtain the services needed in a reasonable time frame.
ODJFS Director Hayes filed a Motion to Dismiss arguing that individuals did not have a right to bring an action in federal court under the EPSDT provisions of Medicaid. The Court, in an Opinion and Order dated September 30, 2004, held that individual Medicaid recipients do have a right to bring an action in federal court under the Medicaid Act and specifically finds that the EPSDT requirements of the Act are enforceable by eligible individuals.
The Court noted that these individuals also have a right to receive these services in a reasonable time frame and in the same amount, duration and scope as any other eligible recipient. The Court held that an individual does not, however, have a right to bring an action to obtain “community based services”, or Medicaid waivers under the EPSDT provisions of the Act.
Scripps releases disability projections
The Ohio Long-term Care Research Project, housed at the Scripps Gerontology Center, Miami University, provides information to legislators, planners and service providers involved in decision-making about services for older people. The project provides both statewide data and county reports.
Even though the U.S. Census Bureau makes this type of data available, many agencies do not have the capacity to analyze such data. In addition, Census Bureau information details the population 65 and over, while many services provided by state and localities are for people 60 and over.
Most projections on the older population simply project numbers. Providing information as Scripps does about disability is important to those planning long-term care services.
County reports fill a unique need for those interested in understanding the characteristics and composition of the older population in each county and in Ohio, now and in the future.
Some data highlights the growth of the baby boom population—the group that will drive future increases in the need for long-term care services. The next few years provide a unique opportunity to plan for the baby boom elders. The trends shown in the county reports can assist groups in their future planning.
A sample of the types of information included in the reports is shown below.
To see the complete reports, visit: www.scripps.muohio.edu/scripps/research/countyreports.html
FAST FACTS about Franklin County and its 60+ population
- Over 13% of population is age 60+ (or 138,651 individuals).
- By 2020, there will be 230,000 individuals age 60+.
- More than 75% of age 85+ are female.
- Disability increases with age: only 3% of 60-69 year-olds have a severe disability, compared to 44% of those 90+.
- Over one-third of of individuals age 60+ have at least one disability.
- By 2020, almost 14,000 individuals age 60+ with a severe disability will reside in Franklin County.
- Over 12% of the age 60+ population live in poverty.
- Almost 20% of individuals age 60+ are racial or ethnic minorities.
- Of men age 60+, 73% are married, compared to only 41% of women.
- Nearly 60% of people age 60+ have 12 or fewer years of education.
- Of women age 60, 42% live alone, compared to 21% of men.
2004, Scripps Gerontology Center
Ohio Disability Vote Project
DD Council and nineteen other disability organizations spearheaded a Get Out The Vote campaign prior to the General Election, Nov. 2.
More than 19,000 registration packets were sent to unregistered voters in the groups. Packets included a letter about how important it is for people with disabilities to vote, a registration form, and a request for an absentee ballot.
After registrations were turned in, efforts began to get people to the polls. Phone calls reminded people about voting day and offers were made to get people rides, or other assistance as needed.
Whether or not you were contacted by the project, we need to hear from you!
How successful was your voting experience?
Did you vote at a polling location or by absentee ballot?
What problems did you have?
Was your voting site accessible?
Did you request assistance?
Were poll workers helpful?
What would you like to see changed?
Please phone, fax or e-mail AXIS. Include your name, city and disability, and state your specific problem.
The Vote Project is going to gather this information, and propose changes to the Secretary of State and to local boards of election. If we are going to improve the voting process before the next election, we must act now!
Please contact AXIS about your experiences: (800) 231-2947 v/tty, (614) 267-4550 fax, firstname.lastname@example.org.
Clark helps Morrow County make voting headway
Maggie Clark, adult basic education coordinator at the Morrow County Board of MR/DD, teaches people voting skills how to get to the polls, what rights voters have, and how to perform the process of voting. She started this project more than 20 years ago. Initially, her trainees met many barriers from election officials.
Following the win of a class action lawsuit in the early 1980s resulting from five women in the county being denied the right to vote, Clark said election officials gained a new, positive attitude about people with disabilities exercising their voting rights. “The change was welcome, and the county paid attention to awareness training of poll workers,” she said.
She said Morrow County now has a 93% voting rate among qualified MR/DD voters and their families.
Clark said that one of her great helps in training is pictures. For example, if she needs to explain that an issue related to family services will be on the ballot, she places a picture of a family next to the wording on her training ballot. She obtains a sample absentee ballot from election officials so that it has the same wording as the actual punch-card ballot trainees will use at the polls. Then she or the trainees paste on the pictures.
Each trainee receives a copy and he or she can use it as a sample ballot to take to the polls. Sometimes voters need assistance in lining up the sample with the actual ballot so they can vote their opinions, and Clark teaches voters that they may ask poll workers, a trusted friend or family member to help.
Typically Clark starts training a month before an election and concentrates mostly on ballot issues. However, she said they will often look at a sheriff’s race, for example, if someone knows a candidate or if the race is toughly contested. This year, they covered the Presidential candidates because there was so much news about them on TV.
She said one of her future challenges will be to figure out how to use pictures with electronic ballots. Jim Dickson, renowned expert in the disability-vote field, noted at the Change Our World...VOTE! conference that picture balloting is done on electronic ballots in other places, such as in Brazil, so it should be possible here.
Dickson is vice-president of Governmental Affairs at the American Association of People with Disabilities, Washington, DC. He and Clark spoke at DD Council’s Annual Conference, “Change our World...VOTE!” on September 8.
People with disabilities share ideas for being involved in grassroots efforts, political endeavors
[Editor’s note: AXIS writer Shari Veleba trekked to her first national political convention in July. Here are some conversations and ideas that were shared with her by convention participants.]
People with disabilities came to Boston as delegates and alternates alike. They also took part in Disability Caucuses on Monday and Wednesday of the four-day convention.
The overriding topic of the caucuses was to “get involved” through voting. Those attending took a little time to speak with me about ways they got politically active in their communities, and why it’s important for people with disabilities throughout the country to do the same.
Patricia Lewis, a delegate from Manhattan, NY, said she’s been involved politically for about ten years. “I wanted to try and make changes for my community (of people with disabilities),” she said.
Lewis, who uses a wheelchair due to spina bifida, said New York City has 13 community boards on which to serve—from monitoring potholes, and traffic lights, to other topics of citywide concern. She’s been a member of several throughout the years.
“You have to be in it to win it,” she said. “We as people with disabilities have to be involved because Society walks over us…because we’re never there on committees or at the polling booth.”
Alexander Wood, a wheelchair user in his 40s, also of New York City, said he’s part of a 504 Club that focuses on accessibility issues throughout the city.
Wood also said a Disabilities Network exists in New York City, to give people with disabilities many opportunities to be involved in the policies that affect their daily lives. “We’ve tried to organize the communities to build cross-disability coalitions that work together identifying issues—winnable issues—so you can see progress,” he said.
David R. Leshtz, chair of the Iowa Civil Rights Commission, has worked and advocated for people with disabilities for 35 years. “It was the first thing I was ever good at,” he said. “Once you think of people with disabilities as struggling for their civil rights, then you view them as struggling for an opportunity.”
Leshtz suggested people with disabilities become active in their preferred political party, at the grassroots level, or at city councils. He also thinks that today’s technology offers more ways to be involved. “Now with the Internet, you can be wired to thousands of people with similar interests and build your coalition that way…or you can run for office yourself.”
Cinda Hughes, a convention delegate from Oklahoma City, and the 2004 Ms. Wheelchair America, said involvement can begin at home. “I was raised with public discussion around the kitchen table,” she said. “Out of necessity, I became politically active.” A member of the Kiowa Tribe, she has lobbied on Capital Hill, keynoted national disability awareness events, and took part in the Macy’s Thanksgiving Day parade.
Hughes encourages people with disabilities to write to their congressmen and women, vote, write to newspapers throughout the year, and educate others about the issues important to people with disabilities.
Carol Danner, 59, of Springfield, Illinois, first became politically attuned at age ten. “Find out what the disability organizations are in your state,” she said, “and participate in them. The only way we can make changes in our communities is to educate people.”
Keith Odom, 25, of Knoxville, Tennessee, became politically involved at age 6 when he began listening to National Public Radio. In 1988 he worked on his first presidential campaign.
Odom, who has cerebral palsy and a visual impairment, gave this strong advice, “Follow the news, read the op-ed pages just to see what other people are saying,” he said. He also pointed to the Internet as a good tool for involvement. “Write a letter to the editor. It shows we’re in tune with the issues. It’s especially true for young people with disabilities like me.”
Cheryl Cummings, 37, of Brighton, Massachusetts, said speaking up is key. “We need to speak up for ourselves,” Cummings, who is blind, said. “We can’t assume that other people will understand what our needs are.” She got involved with the Healthy Boston Coalition, a civic engagement committee for the area, as well as with the Massachusetts Commission for the Blind.
Meghan Elizondo, 32, of San Jose, CA, who has arthritis, got involved by contacting the national Arthritis Foundation, which directed her to other active organizations.
Whatever political philosophy you hold, it truly is vital for people with disabilities to become involved in community and political activities.
As you take part, you also shatter negative stereotypes about disability that so many have held for too long. And, with each new legislator you either meet, or become through running for office yourself, you further empower all citizens with disabilities.
Get involved today. Don’t wait until this country’s next “big” election to become an active advocate. The groundwork we lay now, will assist us in future elections.
All resources listed in DD Quarterly are available from AXIS library: (800) 231-2947 or email@example.com
I’ll Carry the Fork!
Recovering a Life after Brain Injury
2003, Kara L. Swanson
Swanson describes her ongoing process of recovery from a closed head injury with candor and laugh-out-loud humor. She shares day to day challenges of trying to find new ways to accommodate memory and other problems. (This former caterer decided to carry a fork to remind herself that she was cooking!) Includes technical advice from medical and legal professionals as well as tips for using their services. This is a valuable resource for brain injury survivors and their supporters who want information in layman’s terms.
Suzanne Minnich, Executive Director, Brain Injury Association of Ohio, says, “Kara Swanson is inspiring because she is honest about what people face. This book can help people with brain injury, their families and friends, understand the extent of the challenges that are common.”
205pp. $16.95 plus S&H. Rising Star Press, PO Box 66378, Scotts Valley, CA 95067-6378. (888) 777-2207. www.risingstarpress.com
Students with TBI— Thriving Beyond Injury
2004, Ohio Legal Rights Service
This 112-page book is designed to provide parents of children with traumatic brain injuries information about special education and related services as they are provided under the Individuals with Disabilities Education Act (IDEA) in Ohio. This publication has been written to guide parents through the process of getting appropriate special education services through the various stages of traumatic brain injury and rehabilitation.
The booklet discusses transition planning, evaluation, services, special factors, advocacy, negotiation and rights, and includes a list of resources.
Free. OLRS, (800) 282-9181v, (800) 858-3542tty, www.olrs.ohio.gov
Lest We Forget— Spoken Histories
2004, Partners for Community Living and Music from the Heart
This program is a statewide effort to record and preserve the first-person histories of people with cognitive disabilities, their families, professionals and advocates in Ohio prior to and during the “deinstitutionalization” movement and the continuing evolution of person centered community-based services.
This is a valuable tool for inservice and training, community education and awareness and advocacy. Chapters can stand alone: Sent Away, Life Behind the Walls, Broken Families, Locked In, Punishment and Control, Bleak and Barren, Medical Abuse and Medications, Pressing for Change, Moving Back, and Fitting In.
Proceeds from the sale of the CDs will support the next phase of the project, a film documentary, that will present additional histories from individuals involved in the “institutional era” and chronicle the struggles and accomplishments in communities and within families during deinstitutionalization and mainstreaming.
2 hours. 2 CD set. $19.95 plus $5 S&H, Partners for Community Living, 1651 Needmore Rd., Dayton, OH 45414. (937) 898-3655.
I Can, Can You?
2004, Marjorie W. Pitzer
A board book filled with images of babies and toddlers with Down syndrome doing what all kids love to do—explore and discover their world.
16 pp. $8.76 plus S&H. The Woodbine House, (800) 843-7323 or @www.woodbinehouse.com
All Kinds of Friends, Even Green!
2002, Ellen B. Senisi
A seven year old, who has spina bifida and uses a wheelchair has a school assignment to write about a friend. Book shows how he decides to write about an iguana with missing toes. Story provides material for discussing inclusion at school and home.
28pp. $14.95 plus S&H. The Woodbine House, (800) 843-7323 or @www.woodbinehouse.com
Promoting Social Success: A Curriculum for Children with Special Needs
2004, Gary N. Siperstein and Emily Paige Rickards
Field tested with 400 elementary school students, this curriculum focuses on developing the cognitive skills behind appropriate social behavior rather than teaching children a set of specific behaviors. For both self-contained and inclusive classrooms. Includes 66 activity-based lessons organized around topics that build on each other. Students learn to:
- Assess their own emotional states and develop new coping mechanisms
- Identify and interpret social cues and other interpersonal dynamics
- Set appropriate social goals, generate problem-solving strategies, and think about the consequences of their actions
- Consider characteristics of good friendships and explore ways to improve their relationships
Lesson include materials, variations for more advanced and less advanced students, handouts, illustrations, parent newsletters, and lists of additional resources.
512pp. $45 plus $5 S&H. Brookes Publishing Co., PO Box 10624, Baltimore, MD 21285-0624. (410) 337-9580. www.brookespublishing.com
Teaching Math to People with Down Syndrome and Other Hands-On Learners
2004, DeAnna Horstmeier, Ph.D.
This guide focuses on teaching essential math–addition and subtraction–and concepts about time, money, counting and measuring that empower learners to be as independent as possible with daily living skills.
The teaching technique is appropriate for preschoolers just being introduced to number concepts, as well as adults who may not have learned basic concepts in school. No special background is required to teach the lessons. An informal assessment is provided to determine where to start.
Lessons come with stated objectives that can be incorporated in to a student’s IEP.
The author is an Instructional Resources Consultant at the Central Ohio Education Regional Resource Center. She is the mother of an adult with Down syndrome, whose needs for independent living skills placed her on the road to finding ways to teach useful math in a hands-on manner.
382pp. Soft cover. $19.95 plus S&H. Woodbine House, 6510 Bells Mill Rd., Bethesda, MD 20817 (800) 843-7323. E-mail: firstname.lastname@example.org
Plan now to attend!
Ohio’s largest conference planned by and for people with disabilities
May 11-13, 2005
Hyatt Regency Hotel
Your Rights & Responsibilities
Michael Winter, Director for the Office of Civil Rights, Federal Transit Authority
James Dickson, Vice President of Government Affairs, American Association of People with Disabilities
Juliette Rizzo, Office of Special Education & Rehabilitation, Services, United States Department of Education and 2005 Miss Wheelchair America
SOLIDARITY ‘05 is a project of the Disability Network of Ohio—Solidarity, Inc. and the Ohio Developmental Disabilities Council.
For more information visit: www.dnos.org or call (800) 863-0344
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 and 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:
In central Ohio, v/tty:
Fax: (614) 267-4550
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
Copyright 2004. Content may be reprinted upon request.
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