DD Quarterly is a newsletter published by the Ohio Legal Rights Service (OLRS) through a grant from the Ohio Developmental Disabilities Council to bring disability issues and accomplishments to the attention of Ohioans.
Copyright © 2007
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DD Quarterly is produced by the Ohio Legal Rights Service (OLRS) through a grant from the Ohio Developmental Disabilities Council. Copies of this newsletter can be requested from OLRS in large print. If you would like to receive this publication, at no cost, please contact OLRS.
Ohio Legal Rights Service
50 West Broad Street, Suite 1400
Columbus, Ohio 43215-5923
Voice phone: (614) 466-7264 or (800) 282-9181 (Toll free in Ohio)
TTY phone: (614) 728-2553 or (800) 858-3542 (Toll free in Ohio)
Fax: (614) 644-1888
Email: newsletter@olrs.state.oh.us
Website: www.olrs.ohio.gov
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.
It is the mission of the Ohio Developmental Disabilities Council to create change that improves independence, productivity and inclusion in community life for people with disabilities and their families.
Ohio Developmental Disabilities Council
8 East Long St., Suite 1200
Columbus, Ohio 43215
Voice phone: (614) 466-5205 or (800) 766-7426 (Toll free in Ohio)
TTY phone: (614) 644-5530
Fax: (614) 466-0298
Website: www.ddc.ohio.gov
On June 30, 2007, Governor Strickland signed into law a bill which requires the state to establish a Medicaid Buy-In (MBI) option for people with disabilities.
The establishment of an MBI program removes a major barrier to employment by allowing people with disabilities to earn more income and still qualify for Medicaid health coverage. For many people with disabilities, private health insurance that covers their unique health care needs is either very expensive or unavailable. In the past, people who needed Medicaid coverage faced having to choose between working and having health care.
A person with a disability is eligible for MBI if his/her income is below 250% of the federal poverty level (FPL), after excluding the first $20,000 of their income. A person may also have up to $10,000 in assets. People will be responsible for paying a premium on a sliding scale when their family income exceeds 150% of the FPL. Other exclusions may be established in the MBI rule.
Ohio joins 34 other states offering the option to "buy-in" to Medicaid, and an opportunity for people with disabilities to become more self-sufficient, gain more independence and participate fully in all aspects of community life, including employment.
State Senator Stivers and State Representative Peterson, who introduced the MBI legislation, have said that MBI will pay for itself from the income, sales and other taxes that working people with disabilities will be adding to the state's economy.
The law allows the Ohio Department of Job and Family Services 180 days to submit the state plan amendment for MBI to the Centers for Medicaid and Medicare Services (CMS) and allows changes, if necessary, to gain CMS approval. Between now and January 2008, the Department, in collaboration with the MBI Advisory Council (which consists of private and public groups, including ODDC and Ohio Legal Rights Service), will write rules to implement the program. Additionally, regional meetings will be held to spread the word about this new program.
"People with disabilities, their families and others who support them have advocated diligently for more than six years to make MBI a reality," said Bev Johnson, Executive Director of Cerebral Palsy Association of Ohio.
Congratulations to those who worked hard for many years to make MBI a reality for Ohio's workers with disabilities.
In May, the Disability Network of Ohio once again brought Solidarity to the Columbus Convention Center. Lasting from May 30 to June 1, the large and prestigious conference attracted over 500 members of the disability community from all over Ohio.
The theme for Solidarity 2007 was "Abilities in Motion," with an emphasis on empowering people with disabilities to become active contributing members of their communities. Over 30 workshops were conducted around this theme, including leadership training, education, employment, voting and advocacy.
The exhibitor's hall bustled with more than 45 displays, including private and public organizations demonstrating the latest innovative technology and information designed to increase the independence of people with disabilities.
Solidarity 2007 featured three keynote speakers. Michael Beers, an award-winning comedian and advocate, performed his routine at the conference dinner Wednesday evening.
At a luncheon on Thursday, Juliette Rizzo, nominated as one of the country's top 20 young Americans, inspired advocates to pursue their goals and dreams.
The Thursday luncheon also acknowledged the founders of Solidarity, who 18 years ago had a vision of organizing a three day conference for people with all types of disabilities. Solidarity has evolved into Ohio's oldest and largest educational, employment and leadership conference for, about and by people with disabilities.
On Friday, award-winning writer and advocate Deborah Kendrick encouraged people to become involved in the political process and not to let their disability stop them from being activists.
In addition to the usual conference events, Solidarity 2007 also featured an Art Fair and a Health Fair. The Art Fair showcased the work of Ohio artists with disabilities while the Health Fair included nearly two dozen presentations by various health care providers. The Health Fair was dedicated to the memory of Ray Jones, one of Ohio's best-known and well-loved disability advocates.
Sponsors of this year's conference included Huntington National Bank, Nationwide Insurance, Ohio Coalition to Rehab Technologies, Ohio Developmental Disabilities Council, Ohio Department of Aging, Ohio Department of Mental Retardation and Developmental Disabilities, Ohio Hospital Association, Ohio Legal Rights Service, Ohio Rehabilitation Services Commission, Ohio Secretary of State, Ohio Statewide Independent Living Council, and Paralyzed Veterans of America - Buckeye Chapter.
Thomas Fogarty, Chairperson for the event, said "Solidarity 2007 turned out to be another very successful conference. The keynote speakers were great, the workshops informative, the large number of participants who went to the State House sent a message to our legislators and there was entertainment for everyone. I want to thank all of the volunteers, sponsors and participants for making Solidarity 2007 so successful. We now look forward to the 20th anniversary of Solidarity in 2009."
As I sat down to write this issue's message, I considered a variety of topics. Before I could decide however, I made my annual pilgrimage to the State Special Olympic Games. As a consequence, my message for this issue is to learn from the athletes.
On the way home from my daughter Maddie's race, one of her sisters read the athlete's oath: "Let me win. If I cannot win, let me be brave in the attempt." As it always does, the oath made me pause to reflect. We all want to win, but we do not win all the time. Too often, when we do not get what we want, we get bitter, resentful, and angry. Instead of being gracious in defeat and preparing to refresh the effort, we lash out at those we view as responsible for our loss.
I saw none of this at the games over the weekend. There were hundreds of volunteers who gave their time freely to create a great experience for the contestants. Coaches, parents and relatives were all there to support their athlete. I heard no one yelling instructions from the sidelines, and there was no barking at officials or allegations of dirty play. Instead, I saw athletes hug and high-five each other after each race. Everyone cheered every contestant. It was so refreshing.
One athlete exuberantly told everyone who would listen that she could not believe she had finished third. Imagine, elated about finishing third; but that is exactly how I felt as my daughter also finished third, or in her case, last. During her race, she politely refused to pass anyone, turned halfway through the race to return to the starting line, briefly detoured to the long jump pit and finally concluded one of the slowest "dashes" in the history of the games. As usual, she crossed the line with a great big smile, certain by the applause that once again she garnered all the personal attention she sought. Another victory for a third place finisher!
Thanks and kudos to all the volunteers, parents, friends, and, most of all, athletes involved. For one weekend a year, you all come together to reinforce the spirit of good sportsmanship and camaraderie. You remind us that you do not always have to win to be a winner. And lastly, you demonstrate repeatedly that a smile can sure make the world a much better place. Hopefully, we as advocates can emulate the Olympic oath and the actions of the athletes in our various endeavors ... especially the smile.
On May 21, 2007, the United States Supreme Court ruled in the case Winkelman v. Parma City School District that parents have rights under the Individuals with Disabilities Education Act (IDEA), and that they may represent themselves to defend those rights without a lawyer in federal court. Amicus (friend of the court) briefs were filed in support of the parents by Ohio Legal Rights Service, Ohio Legal Assistance Foundation, and the Equal Justice Foundation, as well as others.
The parents in this case, Sandee and Jeff Winkelman, took the case to court without the help of a lawyer, or "pro se" in legal jargon. They prevailed despite opposition from the school district, and also from the district's attorneys, who reported them for the unauthorized practice of law for "representing" their child, Jacob, in court.
The DD Quarterly interviewed Sandee Winkelman about her experience in representing her son in federal court.
Sandee: After the administrative hearings, where we did have an attorney, we had suffered serious financial hardship and had no other option than to file an appeal in the Northern District Court of Ohio and go to court on our own, without a lawyer. We proceeded in federal court on our own and the federal judge affirmed the decisions of the hearing officers. We were again left with no other option than to file an appeal to the Sixth Circuit Court of Appeals pro se. It was at this juncture that the school district raised the pro se defense. The Court of Appeals ordered us to retain an attorney or our case would be dismissed.
Sandee: We were very fortunate that Jean-Claude Andre, an attorney from California, learned about our case after reviewing the Court of Appeals docket, and called us to offer his help. We agreed to take the pro se issue to the United States Supreme Court for a proper review.
Sandee: I am the mother of four children (James 22, Jeffrey 19, Jenna 13 and Jacob 10). Jenna and Jacob are both diagnosed with autism. It was difficult to keep up with the daily schedule, but the children all helped.
My husband worked around the clock. I was home taking care of the household matters. We transported Jacob to school and back each day. I would prepare meals ahead of time to free up time after school.
Jenna and Jacob were receiving private therapy, which required a great deal of time away from home. I would bring a laptop with me and write while in the waiting room when the children were in therapy. Laptops really come in handy since you can bring them most any place.
It was a horrific experience for our family but we all pulled together. My husband and children were very supportive and knew that this would be a long journey and one that we had to see through to the end.
I had to budget my time so the family did not feel the stress of this most contentious situation. I missed out on many social and family functions. I followed my normal daily routine and stayed up most nights typing and researching. Since Jacob never slept through the night, I was already conditioned to not getting much sleep. I would go to the law library on weekends and print information to bring home with me. I really found it workable once I established a routine.
Sandee: I can't say that I ever doubted myself. The more I learned about the law the more I learned that my role as Jacob's mother was huge, and that my responsibility to him was to advocate for his right to a free and appropriate public education that addressed his unique needs.
Sandee: Since leaving the public school system, Jacob has continued to make miraculous progress while attending Monarch School, a private school requiring tuition payments. This progress is truly what motivated me and kept me going. There was never any doubt about what Jacob needed and that Monarch School was meeting his needs, and we had to do whatever it took to keep Jacob safe. Jacob's smile and his progress reinforced me on a daily basis.
Sandee: Since 2003, our family withstood many bullying and intimidation tactics from the school district. The district reported us as abusive parents to Child Family Services, and the district's attorneys reported us for unauthorized practice of law. There were many other unnecessary legal strategies they employed on our family.
We stood strong through it all. We had to learn how to deal with these difficult circumstances and did not let this change us from who we are. We will continue to advocate for people with disabilities, not just our own son.
Sandee: The 2003 appeal at the Sixth Circuit will finally move forward on the merits. Because of the national attention we received with our case, we will be represented and will not have to proceed pro se. We have not had any support from the school district since 2003 and we are seeking tuition reimbursement for all school years since that time. We are awaiting the decision.
Sandee: I am receiving requests to speak about my experience and have several speaking events scheduled. I am planning to conduct parent trainings this fall. I believe it is important to share my experience with parents so they may have the tools they need to advocate for their child.
Sandee: There are many reasons why parents are unable to retain attorneys to represent them. Money is an issue, and so is the reality that few attorneys work in the field of special education. When parents have exhausted all possibilities of finding representation and are faced with representing their children pro se, they must do what is necessary for their child. Each situation is different and for me, I was left with a do or die situation and I did what a parent must do — I took responsibility for my child with a disability and took my role as a parent very seriously.
I would represent my child again if faced with the same situation — absolutely I would.
United Cerebral Palsy (UCP) recently released a report, The Case for Inclusion 2007, on how well meaningful community-based supports under Medicaid were provided to Americans with intellectual and developmental disabilities. Medicaid programs for each of the 50 states and the District of Columbia were evaluated using several criteria, including: the state's level of success in promoting independence; tracking quality and safety; keeping families together; promoting productivity; reaching those in need; and providing services at a reasonable cost. UCP used information from several sources, including the Centers for Medicare and Medicaid Services, Coleman Institute, Council on Quality and Leadership, Human Services Research Institute, Kaiser Family Foundation, PAS Center, Quality Mall, Research and Training Center on Community Living, and U.S. Census Bureau.
Ohio ranked 48th in providing meaningful community-based supports, with only the District of Columbia, Texas, and Mississippi trailing behind. When looking at each criterion, Ohio's strength was in the area of supporting meaningful work.
Weaknesses were mainly in the area of promoting independence through Medicaid home and community-based services. When compared to other states, Ohio spent less for people to receive these services. Also, the number of large state facilities and the number of people in those facilities were more than most states.
Overall, Ohio's rankings across all categories reflected a lack of Medicaid services to provide access and support for integrated community living for individuals with disabilities.
Advocates can use this report to educate and inform others about: (1) how Ohio performed overall in serving people with disabilities, (2) what services and outcomes need improvement in Ohio and (3) which states were top performers in key areas, so they can look to those states as sources for ways to improve. Share the findings of the report with policymakers, providers, individuals, families and other advocates to help support policy reforms and bring attention to the need for adequate funding for community-based resources.
| Ohio's Rank (1 is best) | Key Outcome/Data Element |
|---|---|
| 24 | Supporting meaningful work |
| 23 | Keeping families together through family support |
| 37 | Supporting individuals in the community and home-like settings |
| 43 | Allocating resources to those in the community (not in an Intermediate Care Facility) |
"Too often, states focus just on how much is spent for various Medicaid services or populations, rather than on what outcomes that spending is achieving." — The Case for Inclusion 2007 report
The report's findings showed that it doesn't matter if a state was large, small, rich or poor to provide quality community supports through Medicaid. And it doesn't matter how high or low a state's taxes were, or how much a state spent per individual. Instead, what mattered was how a state acted and what was achieved. Overall, UCP concluded that every state has room for improvement.
UCP plans to update the report annually as a way to compare how states are performing and improving. To read this year's report, visit the UCP website at: www.ucp.org/medicaid/.
As required by the consent order in Martin v. Strickland, the Departments of Mental Retardation and Developmental Disabilities and Job and Family Services surveyed people (or their guardians) living in developmental centers, Intermediate Care Facilities for the Mentally Retarded, and nursing homes. The survey was used to determine their interest in moving from their current segregated facility to a home and community based waiver setting.
The survey was sent to 6,939 individuals and 4,722 responded to the survey. Forty percent (1,897) of the respondents reported they want to explore their options for moving in the next two years, and an additional 29% (1,384) reported they would like to move after two years. Another 7% would like more information about home and community based waiver options.
Overall, the results showed that 76% of the respondents indicated some interest in moving to an integrated setting.
The survey may be used to assist the Departments in the planning and implementation of the Martin consent order.
Safety and security procedures sometimes make air travel difficult for people with disabilities. Here are some resources to make air travel a better experience:
From the U.S. Departments of Transportation and Homeland Security:
For questions or immediate help, call the U.S. Department of Transportation's toll-free hotline at 1-800-778-4838 (voice) or 1-800-455-9880 (TTY).
When: September 20 - 21, 2007
Where: University Plaza Hotel and Conference Center, Columbus, Ohio
The conference will include keynote speakers and workshops about resources, research, government initiatives to promote individual choice, access to services and many other topics. Participants will also have many opportunities to network and socialize. For information and to register, go to www.biaoh.org
The law establishing Ohio's operating budget for fiscal years 2008-09 was the culmination of a bipartisan effort among both houses of the General Assembly and the Governor's Office. Negotiations across parties and between the House and Senate shaped a budget that, in large part, preserved the Governor's emphasis on providing health care coverage for children and families, community-based supports, and tax relief for older Ohioans and those with disabilities. This was achieved within a tax structure adopted two years ago by the Republican dominated General Assembly.
This article highlights budget provisions that affect people with disabilities and their families.
Governor Strickland vetoed almost 40 provisions of the budget bill and provided detailed explanations for his vetoes. The most notable disability-related veto was the Special Education Scholarship Pilot Program. The Governor stated that funding private schools with public tax dollars deprives the state and its taxpayers of proper oversight and accountability, and drains funds from students receiving special education in public schools. The Governor also expressed an interest in working with parties to find a solution to this issue.
Earlier this year, Ohio and 17 other states were awarded a Money Follows the Person (MFP) grant from the U.S. Department of Health and Human Services to rebalance their service delivery system for long-term care and Medicaid funding. Ohio will receive $100 million in enhanced federal matching funds over five years for the implementation of the MFP project.
MFP allows for Medicaid funding of services to "follow the person" from an institutional to a home setting. The two main goals during the first five years of the MFP grant are to:
The 2,200 people who will move under the grant will be from nursing homes, hospitals and Intermediate Care Facilities for the Mentally Retarded. The focus of this grant is to allow people who have been under long-term care at least six months in these types of facilities to have the opportunity to move to a community setting. A distinct set of "post-institutional services will be created by using existing and planned home and community-based options, such as Medicaid waiver programs and existing state plan Medicaid benefits. In addition, other services and supports not funded through Medicaid will be used to support people during their transition.
An MFP planning and advisory group, created by the Ohio Department of Mental Retardation and Developmental Disabilities, has begun preparations for grant implementation. The planning group has organized subgroups that will identify issues and make recommendations to the larger group. The subgroups will focus on housing, workforce development, services and self-direction, marketing and recruitment, rebalancing and operational processes.
The planning and advisory subgroup is considering implementing services like independent living skills, peer support, benefits coordination, housing locator services, respite, day habilitation, supported employment, social work and counseling, nutrition and nursing.
This is a great opportunity for Ohio to allow their elders and people with disabilities to make meaningful decisions about their living environments and the services they receive. The Ohio Department of Job and Family Services' website includes additional information about the MFP initiative: http://jfs.ohio.gov/OHP/infodata/MFPGrant/info.stm
Advocates for people with disabilities testified on a number of bills during the last few months, giving Ohio lawmakers plenty of input from self-advocates and family members.
Former ODDC member Glenda Pope, Ph.D., testified before the House Judiciary Committee in favor of House Bill 129, legislation that would create a pilot program to expand Ohio's Sunshine Laws (open meetings laws) that would allow participation in public meetings by telephone or video teleconference.
Pope told committee members, "My own personal experiences serving on ODDC over the years have led me to believe that allowing members to participate by phone or video would improve Council's efficiency."
"Because of my mobility challenges, I was often faced with the tough decision of whether to travel to Columbus during the harsh winter months or stay home," Pope said. "Medical complications resulting from my disability have sometimes restricted me to a hospital bed or to my home."
Pope was also joined by Lucille Walls, Executive Director of the Governor's Council on People with Disabilities. Walls testified to the committee about how teleconferencing may be considered a reasonable accommodation under the Americans with Disabilities Act.
"For individuals with chronic health conditions this legislation provides both dignity and inclusion," Walls said. "It would allow residents of Ohio living with a temporary or permanent health condition to participate, and it would prevent isolation."
Talking about her first experience testifying before a legislative panel, Pope said, "The process was nothing like I had envisioned. The representatives were not as intimidating as I imagined. I discovered that they are much more receptive to hearing real life experiences from people with disabilities."
A number of advocates stepped forward to testify on issues contained in the $52 billion operating budget. The 2,600-plus page spending measure contained numerous policy changes and funding for programs.
After almost three months of work on the bill, lawmakers included funding for the Martin Settlement, Medicaid Buy-In, Money Follows the Person and many other programs supported by advocates.
Colette Adams, Chair of ODDC's Public Policy Committee, testified in support of many of the items contained in the budget bill and asked members of the Senate to reconsider creating a school joint taxing district in Cuyahoga County.
The new language was added late in the budget process and would apply only to schools in Cuyahoga County. The revenues from the new levies would be used to support services for the treatment of behavioral health issues and autism.
"While our Council appreciates the intent of this language, it is our belief that the creation of new levy authority by local school districts further muddies the waters surrounding local government services and public school funding," Adams said.
"At the very least, this proposal should be considered separate from the state's operating budget," she said.
The Governor line-item vetoed the Cuyahoga joint-taxing language when he signed the budget bill.
By Jeff Corzine, Senior Program Administrator, Ohio Department of Job and Family Services
Ohio Medicaid has successfully completed the statewide expansion of Medicaid managed care. As of July 1, 2007, over one million Covered Families and Children (CFC) Medicaid consumers and 102,401 Aged, Blind or Disabled (ABD) Medicaid consumers now receive their covered Medicaid services as members of one of nine participating managed care plans (MCPs).
MCPs offer Medicaid consumers several advantages over traditional, fee-for-service Medicaid. MCPs, at a minimum, must provide the same medically necessary covered services available under traditional Medicaid. They may also offer services not generally available to consumers, such as access to over-the-counter medications, assistance with transportation, and incentive programs for preventive care and pregnancy-related services. Plus, MCPs may provide care management and coordination for those with complex or high cost health care needs. MCPs can assist in finding specialists and specialty services. This additional support is especially important for Medicaid consumers with physical/intellectual disabilities or developmental delays.
Most Medicaid consumers must enroll in an MCP. There are certain instances in which enrollment exceptions are granted. These exceptions fall into two categories: exemptions and exclusions.
MCP enrollment exemptions apply to CFC Medicaid consumers when they are 19 years of age or younger and 1) are eligible for Supplemental Security Income (SSI), or 2) are receiving adoption assistance or foster care maintenance under the Title IV-E program, or 3) are in foster care or an out-of-home placement, or 4) are participating with the Ohio Department of Health's Bureau of Children with Medical Handicaps (BCMH). Persons who are in one of these situations have the option of enrolling in an MCP or remaining covered under the traditional Medicaid program.
MCP enrollment exclusions apply to ABD Medicaid consumers when they are: (1) eligible for both Medicare and Medicaid (dual eligible), or (2) children with disabilities under 21 years of age, or (3) participating in a Medicaid home and community-based waiver program, or (4) permanent residents of a nursing facility or Intermediate Care Facility for the Mentally Retarded or (5) required to meet a spenddspend-downt to receive a Medicaid card. Persons who are in one of these situations may not enroll in an MCP.
Expansion of Medicaid managed care is complete in all but three Ohio counties. The expansion for Columbiana, Mahoning and Trumbull counties has been delayed until later this summer.
Ohio regions will now begin open enrollment periods where MCP consumers can choose to change their MCP selections. The following table shows the open enrollment month for eight managed care regions for both the CFC and ABD managed care programs. People have up to 90 days to change their selections if they are dissatisfied with their choice. Thereafter, they remain enrolled in their chosen MCP until the next open enrollment month. If you receive an enrollment notice and believe you or a family member falls into one of the exception categories, call the Managed Care Enrollment Center (MCEC) at 1-800-605-3040 and speak with an enrollment representative. You can also reach the MCEC online at www.ohiossc.org .
| Region | ABD Managed Care Enrollment Month | CFC Managed Care Enrollment Month |
|---|---|---|
| Central | May | November |
| East Central | March | June |
| Northeast | December | October |
| Northeast Central | April (pending) | April (pending) |
| Northwest | February | September |
| Southeast | April | August |
| Southwest | January | July |
| West Central | February | July |
by Peter Keiser and Tena Benson, Division of Developmental & Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati UCEDD
The Transition Clinic at the Cincinnati Children's Hospital Medical Center's Division of Developmental and Behavioral Pediatrics began in the fall of 2002. The Clinic is funded in part through the Division's University Center of Excellence in Developmental Disabilities Grant. An interdisciplinary team helps individuals with developmental disabilities and their families navigate the transition process. The Clinic focuses on three components of transition: from pediatric child-centered care to adult-oriented health care; from living at home with family to independent or group home living; and from school to work.
The Clinic team members include a physician, a nurse, a social worker and a vocational/educational coordinator. The physician does the medical evaluation and provides medication management. The nurse does a self-care skills assessment and provides education to the individual and family on self management and health care issues. A social worker does an intake assessment, provides information regarding community resources and guardianship issues and advocates with community-based agencies to obtain services for children and their families.
Vocational-educational coordinators from the Hospital's Project SEARCH program collaborate with various community agencies (i.e. Bureau of Vocational Rehabilitation, county board of Mental Retardation and Developmental Disabilities, high schools, training programs, post-secondary institutions) to help the child and family develop a transition plan that includes the child's vocational and educational needs. Having transition coordinators focus on the vocational and educational needs, while taking into consideration the individual's strengths and needs, makes the Clinic unique.
A vital component of the Clinic is the weekly care conference. This allows the team members an opportunity to provide updates on individuals, discuss concerns and share information to ensure that all aspects of the transition plan are being addressed.
For information about the Transition Clinic, contact Peter Keiser at (513) 636-8365.
Tom, an 18 year-old with autism and mild mental retardation, has been involved with the Transition Clinic for almost three years. He first came to the clinic because of increasing school and behavioral concerns.
Following his initial visit, Tom was referred for psychological, scholastic, communication, and physical therapy and occupational therapy evaluations. The results of the evaluations provided valuable information for the Clinic's team.
The physician confirmed Tom's diagnoses, identified new diagnoses and prescribed an appropriate medication therapy. Clinic staff developed a program to improve Tom's self care, socialization and educational skills.
The transition coordinator helped Tom and his family to collaborate with his school to include a transition plan in his Individualized Education Program (IEP). And as Tom's 18th birthday approached, the social worker discussed important issues with Tom and his family, such as Supplemental Security Income (SSI), Medicaid, and guardianship.
According to Tom's mother, "The Transition Clinic has made a big difference in Tom's life and has improved our family's life immensely. The help we've received from the whole team has helped put us back on track in terms of Tom's transitioning beyond high school."
By Paula Rabidoux, Ph.D., Nisonger Center, UCEDD
The Nisonger Center is a University Center for Excellence in Developmental Disabilities (UCEDD) located on the campus of The Ohio State University Medical Center. Steven Reiss, Ph.D., Professor of Psychology and Psychiatry is the director of Nisonger Center.
The Center provides comprehensive interdisciplinary evaluations for children from birth through age 22 with developmental concerns and their families. These evaluations are completed at clinics offered by Nisonger Center. The clinics provide families with educational, medical and therapeutic suggestions by determining medical diagnoses and analyzing a child's functional behavior and development. Clinicians from psychology, speech language pathology, developmental pediatrics, audiology, physical therapy and occupational therapy may participate on a team assessment in addition to a parent advocate and the clinical coordinator. The clinics also provide interdisciplinary training for graduate students who will be working with children in many health-related fields.
One interdisciplinary clinical project is the collaborative Nisonger Center Developmental Disabilities Clinic at Columbus Children's Hospital. It began one year ago to reduce the wait list time for children from birth to age six seeking diagnostic assessments. A team from Nisonger collaborates with developmental pediatrics, occupational therapy, physical therapy and nursing from Children's to provide comprehensive services for children with suspected developmental disabilities.
A new multidisciplinary Williams Syndrome Clinic will be starting in Columbus in October 2007 and will offer specialized evaluation and treatment for children, adolescents, and adults with Williams Syndrome. The specialists involved will include a developmental pediatrician, behavioral psychologist, educational psychologist, speech/language therapist, occupational therapist, and physical therapist. Involvement with genetics and cardiology will be coordinated as necessary for each family.
The Nisonger Center clinics are a hallmark program across the state and nation. Faculty and trainees have received recognition for many projects, presentations and awards. The success of the clinical activities is due to a focus on providing services to families and training for students - Nisonger's two most important constituents. For more information, contact Sherry Feinstein at Feinstein.17@osu.edu .
What: A unique conference for adult siblings of people with MR/DD, organized by the Nisonger Center.
Participants will have an opportunity to share ideas, information, and experiences, and receive tools to help them prepare for the health and wellbeing of a sibling, themselves and their family.
When: October 12 & 13, 2007
Where: Marriott Airport Hotel, Columbus, OH
Cost: $85.00 registration fee. Scholarships may be available: contact Tom Fish.
For information, contact Tom Fish by telephone at (614)292-7550 or by email at fish.1@osu.edu, or visit www.ohiosibs.info
Also learn about the Sibling Leadership Network Conference to be held in Washington DC on November 10-11, go to www.siblingsupport.org
The Ohio Developmental Disabilities Council needs your help in determining the need, if any, for changes in public policies. If you are a person with a disability or a family member of a person with a disability, please take the time to complete the Children's Issues Survey. The survey is available on page 14 of the PDF version of this newsletter (see http://ddc.ohio.gov/Pub/DDQuarterly.htm).
"If you don't expect too much from your child, your life will turn out better." That's what Kevin and Jackie Martin were told when their son, Justin, was born three months premature. But earlier this summer, the neonatologist who spoke those words was proven wrong when 11-year old Justin, who has cerebral palsy, read from his collection of poetry at the Ohio Magazine Poetry Corner at the Annual Columbus Arts Festival. Each year, the Greater Columbus Arts Council invites people from the poetry community to audition for the Poetry Corner. Justin was the youngest of 21 poets chosen (the next closest in age was 30 years old).
Reading at the Poetry Corner was yet another benchmark in Justin's blossoming career as a poet. Justin has been recognized as a talented writer since second grade. Through his rich vocabulary and his ability to translate his thoughts and ideas into words, Justin creates provocative stories and poems that astound audiences. He has written poetry, read poems, and given interviews to several arts and disability organizations. This year, he conducted an in-service for the middle school language arts teachers in his school district. "He, a fourth grader, taught the teachers!" jokes his mother.
There were many obstacles that could have discouraged Justin from becoming the talented writer he is today. However, through the support and encouragement of his teachers, classmates and family, Justin overcame each obstacle and was inspired to write his poetry. For example, handwriting has always been a major challenge for him. Although he now composes poetry on his computer, getting a computer that he could use at school was difficult. The school was resistant to recognize Justin's need for assistive technology, and it took time and patience to advocate for the equipment he needed.
Justin's poetry not only entertains, but also helps to remove the stigma associated with people, especially children, who are in wheelchairs and have cerebral palsy. When Justin is reciting his poetry, he feels that his presence educates others on how important it is to judge a person by who they are and not by how they look.
And on that evening in June at the Poetry Corner, Justin proved to the audience that neither age nor disability prevents him from being, as his teacher and writing mentor puts it, "the most promising talented writer I've ever encountered in my 32 years as a teacher."
Participants will learn about products, services, and resources that are, or should be, available to children with visual impairments, and meet and network with other families.
When: September 15, 2007
Where: Ohio State School for the Blind, 5220 N. High St. in Columbus
Cost: Free, for parents and children
Register TODAY by calling 1-800-835-2226 or send an e-mail message to Mary.hiland@sbcglobal.net
Are you helping your school-age son or daughter plan for his or her future? If yes, then you are invited to attend this one-day conference designed specifically to assist parents and families in getting through the complicated maze of transition information, forms, eligibility program, funding and more.
In easy to understand language, learn how to navigate the often confusing transition process. Hear how successful young adults with disabilities chose their paths to adulthood, how they were educated or trained, and how they selected their careers.
Conference is free to parents of children with disabilities. For other people, the registration fee is $35. Registration includes all materials and lunch. Seating is limited to 150, first-come, first-served. Complete and send in the attached Registration Form TODAY!
Tuesday, September 18, 2007
10 am - 4 pm
Hyatt Regency Hotel
Columbus, OH 43215
Conference produced by AXIS Center for Public Awareness. For more information and to request registration materials, call (614) 262-8124 or email: axiscenter@aol.com .
Do you, or does someone you know, get a federal benefit check, like SSI or SSDI, in the mail? If so, you are at greater risk for fraud and identity theft. In 2006, more than 57,000 paper benefit checks were stolen or forged — totaling about $54 million dollars.
Instead of getting a paper check in the mail, the United States Treasury says that direct deposit is the safest way you can get your benefit payments. You can switch to direct deposit through the Treasury's Go Direct® program, and cut your risk of lost checks, stolen checks, identity theft and fraud.
With direct deposit, your money is put in your account, automatically, on payment day. If you don't have a bank or credit union account, you can call the toll-free Go Direct® helpline at (800) 333-1795 (English and Spanish) and ask for more information about opening an account.
Direct deposit is convenient for you and also saves taxpayers money on postage, printing and other costs. If everyone who receives a benefit check switched to direct deposit, taxpayers would save about $120 million a year, which can help pay for Social Security in the future.
To sign up for direct deposit, go to your bank, credit union or local Social Security office and ask for Go Direct®, or call the Go Direct® toll-free helpline at (800) 333-1795, or go to Go Direct's® government-secure website: www.GoDirect.org (English) or www.DirectoASuCuenta.org (Spanish)
Changes in Ohio's Homestead Exemption, a statewide program that offers a reduction in real property and manufactured home taxes, will allow more Ohioans to qualify for tax relief. The Homestead Exemption is now available to all Ohio homeowners, regardless of income, who are either age 65 or older or who have a permanent disability. Previously, eligibility for the Homestead Exemption was restricted because of income limits. The following provides more information about the Homestead Exemption.
To qualify for the Homestead Exemption you must be an Ohio resident homeowner who:
Also, you must own and occupy your home as of January 1, 2007 for real property or January 1, 2008 for manufactured home property.
All households who qualify for the Homestead Exemption will receive a $25,000 property tax exemption on the market value of their home.
You must complete an application form and file it with your local county auditor. Forms are available at your county auditor's office. You can find your county auditor's office by calling the County Auditors' Association of Ohio at 614-228-2226 or by visiting their website at www.caao.org . Or you can contact the Ohio Department of Taxation at (800) 282-1780 or visit their website at www.tax.ohio.gov .
Applications must be submitted on or after July 1, 2007 and received by your county auditor's office no later than October 1, 2007.
If you claim a physical disability, you must have the certificate on the back side of the application signed by a physician licensed to practice medicine in Ohio. If you claim a mental disability, you must have the certificate signed by a physician or psychologist licensed to practice in Ohio. You may also submit a certificate from a state or federal agency that classifies you as permanently and totally disabled.
If you are eligible, your county treasurer will enclose a notice with the amount of your tax reduction with the first tax bill you receive in 2008. If your application is denied, you will be notified on or before November 1, 2007.
The Office of the Ohio Consumers' Counsel provides information about programs for people who struggle to pay monthly utility bills, including electric, natural gas and telephone bills. Here are a few programs:
Percentage of Income Payment Plan (PIPP): Allows low-income consumers to pay a percentage of their income toward monthly electric and natural gas bills.
Telephone Lifeline: Provides phone service at a monthly discount with no deposit or installation charges for households with an annual income at or below 150% of the federal poverty level (FPL) or if the consumer receives assistance through certain government programs.
Summer Crisis Program: Provides an air conditioner and/or up to $175 toward the electric bill to a household that has an annual income at or below 175% of the FPL, and either has a member who is at least 60 years old or who has a health condition aggravated by the heat.
For information on these or other programs, contact OCC at 1-877-742-5622 or on the web at www.pickocc.org
Editor's Note: Several Ohio communities have undertaken emergency preparedness for individuals with disabilities and their families. Last issue, we featured Lucas County's experiences. In this issue, we focus on what southwest Ohio is doing to prepare for emergencies.
In 2006, Kathy Lordo, Assistant Health Commissioner, Hamilton County General Health District, and Duane Stansbury, Health Commissioner, Warren County Combined Health District, were concerned that people with disabilities were not included in planning for potential emergencies and their needs might not be considered. Because of its cross-disability focus, they connected with the Inclusion Network. The Emergency Preparedness Collaborative (EPC) was created from that contact.
Ms. Lordo reports, "Many times collaborative work is hampered by egos but this has not been the case with EPC. Each agency is focused on finding ways to make sure that all members of our community are prepared for emergencies. As our work progresses, we hope to be able to share these solutions with other communities."Peg Gutsell, Executive Director of the Inclusion Network, affirms, "EPC began as a real partnership of the health districts and people with disabilities. We are not an afterthought in emergency preparedness."
The EPC focuses on planning based on functional needs (mobility, transportation, independence, communication, supervision). Dr. Gutsell stresses, "Some people think that the lives of people with disabilities are so different that planning needs to happen separately. Actually, while individual approaches may vary, people experience emergencies quite similarly."
The Collaborative has grown to more than 20 agencies and will work to coordinate efforts in eight counties in Southwest Ohio. Members include health departments, first responders, Red Cross, and advocates and providers for people with disabilities and older adults. Three work groups tackle critical planning for Sheltering and Self Care, Transportation and Evacuation, and Communication.
The EPC is working on Memoranda of Understanding (MOUs) among agencies. MOUs will address practical matters such as preparing for sharing assets and resources during emergencies, and planning points of distribution and how to mobilize staff and volunteers.
As an indicator of its commitment to the inclusion of individuals with disabilities in all phases of emergency management, the Hamilton County General Health District hired a project manager who will focus on the tasks of the Communication work group. Assistant Health Commissioner Lordo advises, "Disasters are not selective. They affect all members of a community. And it's just common sense that since everyone can be affected that everyone should be involved in the preparation process. The EPC is the vehicle that brings all agencies committed to preparedness together."
The NOAA Weather Radio (NWR) receiver can alert people who are deaf, hard of hearing or vision impaired about severe weather and other emergencies, like tornados, flash floods or chemical accidents.
The NWR receiver receives emergency information and sends this information to an alerting device (for example, to a strobe light, a visual and vibrating alarm with a text readout, a bed shaker, a pillow vibrator). The NWR receiver can be adapted to convert weather messages into large print or Braille. Receivers cost from $50 to more than $100.
For more information about NWR, and where to buy an NWR, visit the NOAA National Weather Service website at www.weather.gov/nwr/special_need.htm
Provisions to fund the Martin settlement were included in Ohio's operating budget for 2007 - 2009. Under the terms of the settlement, 1,500 people with developmental disabilities who choose to live in integrated places across Ohio will receive needed supports and services. "The Martin settlement is a victory towards getting more people with disabilities into the community," stated Claude Martin, an original named plaintiff.
The 1,500 Individual Options (IO) Medicaid waivers are for Martin class members. The class is defined as "all mentally retarded or developmentally disabled Ohioans who are, or will be, in need of community housing and services which are normalized, home-like and integrated, and a subclass who, in addition to being members of the class, are or will be, Medicaid recipients."
Waivers will allow at least 200 people who choose to move from Intermediate Care Facilities for the Mentally Retarded (ICFs/MR), and at least 80 people from nursing homes, to move to more integrated places. The Director of the Ohio Department of Mental Retardation and Developmental Disabilities (ODMRDD) will develop a formula for the remainder of the waivers that must consider people on the county board waiting lists. The settlement goal is for ODMRDD to provide 600 people with waivers in 2008, and 900 people in 2009.
OLRS filed the federal class action in 1989 as Martin v. Celeste and the case was litigated for the next 18 years. In March of 2007, a federal judge signed the Consent Order for the settlement of the case inherited by the new Governor, Martin v. Strickland. "The Martin case has taken a long time to get resolved and it will take a longer time to get to where we need to be," Claude Martin concluded.
Line items in ODMRDD's budget appropriations will allow 1,500 Martin class members to choose community living, and include $6,159,766 in fiscal year 2008, and $29,036,451 in fiscal year 2009. The State will make $4.2 million available to county boards for accessible housing. OLRS will receive $150,000 in litigation related expenses and costs.
OLRS will monitor the implementation of the Martin settlement as 1,500 people choose community integration and make their choice a reality.
OLRS has designed a priority setting planning process to assure fulfillment of the agency's mission, which is to protect and advocate, in partnership with people with disabilities, for their human, civil and legal rights.
Part of the planning process is to gather information from people with disabilities about the issues that are important to them. OLRS developed a brief survey that people with disabilities can take to answer questions about major issues that affect their lives — issues like accessibility, housing, employment, health care, education, child care, and transportation.
Information from the surveys will help the agency plan its future direction and legal advocacy priorities.
A copy of the survey is available on the OLRS website at www.olrs.ohio.gov or you may request a copy by contacting OLRS: 1-800- 282-9181 (voice) or 1-800-858-3542 (TTY). For more information, contact Tom Hemmert at Themmert@olrs.state.oh.us .
OLRS' access to children and adults with disabilities came under scrutiny during the biennial budget process. The House version of the budget bill contained language that would have made it difficult for OLRS staff to immediately investigate situations where the agency had reason to believe that people were being abused and neglected.
The changes to OLRS' ready access were sought by behavioral health and other residential providers. The changes would have delayed OLRS from conducting timely investigations on behalf of individuals who are most at risk, among these: people with severe disabilities who can not contact OLRS; people who are facility residents whose contacts outside the facility are limited; and children, especially those in out-of-home placements. The changes would not have allowed OLRS to talk with staff or look at records unless OLRS had the consent of each individual client.
This legislative attempt was not the first challenge to OLRS' access. In the past, two children's mental health residential treatment centers denied OLRS access to records and were sued by OLRS. In both cases the court confirmed that OLRS is entitled to ready access to the records of children at licensed residential facilities. In addition, the U.S. Department of Health and Human Services provided guidance to health care providers, affirming that HIPAA (Health Insurance Portability and Accountability Act) did not prevent providers from providing the Protection and Advocacy (P&A) system (OLRS is Ohio's P&A) access as required by federal and state law.
When the disability community was made aware of the implications of these changes, people with disabilities and their families contacted elected officials. Diverse organizations representing individuals with disabilities, families, advocates, and county boards of mental retardation and developmental disabilities and behavioral health authorities also made their opposition known.
As a result, OLRS and residential providers compromised on changes that were adopted by the Senate, and signed into law. This compromise restored access to people, facilities, and staff, and record confidentiality which had been deleted in the House bill. The compromise also restored "ready access" to state and county records, and removed the restrictions on which reports the Ohio Department of Mental Health must send to OLRS' Ombuds section.
Furthermore, certain providers (community residential facilities, contract agencies of the county boards) must provide OLRS ready access to records when one of the following consents:
The new language regarding consent is more restrictive than the former language and the consequences of the changes, particularly in the Ombuds section of OLRS, are not fully known at this time.
The past three months and the biennial budget process have proved challenging to OLRS and its clients, highlighted by the expected approval of the Martin settlement and the unexpected ambush on OLRS' "ready access" to clients and their records.
Legislative approval of the funding for the court approved settlement in Martin v. Strickland is excellent news for Ohio's disability community, and brings opportunities for the 1,500 people who will receive new, state funded, waivers over the next two years. But while Martin is an important step, as noted by plaintiff Claude Martin in this newsletter, Ohio still has far to go in order to fully embrace the promise of elimination of undue segregation of people with disabilities called for by the Americans with Disabilities Act (ADA) and Olmstead. While Ohio's MRDD system of supports and services has changed over the past 18 years, the essential goal of the Martin litigation — to allow people with disabilities to choose services in a home-like setting rather than an institution — remains just as relevant today.
For people with other disabilities and others for whom Martin does not provide relief, this goal remains illusory. Ohio continues to rank at the bottom of the states when surveyed about community integration of people with disabilities. In our day to day work, as in discovery that was obtained in preparing the Martin case for trial, we regularly see evidence that the reliance of Ohio on nursing facilities (NF) as a placement of first resort for those with disabilities is increasing, not shrinking as the ADA would seem to require. From the 40 year-old with chronic mental illness in a "behavioral unit" to a growing number of people with intellectual and developmental disabilities, NFs intended for skilled or long term nursing care, not behavioral or developmental services or permanent residence, are increasingly "home" for Ohioans with disabilities.
In part, this reflects the realities of funding under Medicaid: NF services are one of the "mandatory" Medicaid services specified by federal law. If a state participates in Medicaid it must offer NF services.
But Ohio does this "better" than most states. A vibrant, politically savvy, and well organized nursing home industry exists. Even as the budget process unfolded against a backdrop of weakening revenue, the nursing home industry gained $80 million in the state share of Medicaid appropriations. By the end of the legislative process, this amount was reduced by half to resolve a projected $230 million deficit over the next two years. Ohio continues to be the only state that fixes NF rates through legislation rather than the more flexible administrative rule setting.
As the occupancy rate of existing NFs has settled to around 85%, Ohio operators have found new ways/populations to fill the beds. We recently dealt with a case involving a number of people with disabilities who had been transported from Hawaii for "temporary" rehabilitative placement in an eastern Ohio NF, who then learned that the door for their return home had been shut! Through coordination with the Hawaii Protection & Advocacy system, the people were returned home. (I recently learned that as a result of these cases, the Hawaii legislature passed a law that inhibits such placements.) Placements from West Virginia and other contiguous states are more common. However, the bulk of the placements are from within Ohio; are approved by guardians who feel that they have no other choice; and have occurred in spite of federal laws that would seem to say they shouldn't.
But focusing criticism on the nursing home industry misses the point: the people and their guardians have no other choice. Ohio agencies must continue to create new options for people with disabilities. Federal monies to seed that effort are available and this administration should take every opportunity to participate. Structural change is necessary, however, and that cannot occur when limited dollars are prioritized by the caregivers, not those receiving the care.
While the issue is very different, the theme of accountability of providers also threads through the challenge to OLRS' ready access, which was introduced in the House version of the budget bill at the request of Medicaid-funded behavioral health and residential providers. These providers, who have been successful over the last 16 years in reducing government scrutiny over their activities, have been at odds with OLRS for many years over allegations of abuse of physical and chemical restraints and seclusion on adults and children with disabilities in residential settings. If enacted, the House language would have prevented or at least delayed OLRS' ability to investigate serious allegations of abuse and neglect.
Because of a remarkable response by those with disabilities, who lead the discussion in many forums, the residential providers remained the only entities supporting the restrictions on OLRS access once the bill was considered in the Senate. People with disabilities, their families, advocates and self-advocates, county boards and associations were all aligned against the changes and the manner in which they were sought. We were especially pleased by the support from groups that do not always agree with positions taken by OLRS on behalf of clients, as they recognized that their members and family members shared with OLRS a common interest in having an effective and nationally recognized protection and advocacy system for people with disabilities in Ohio. My hope is that we can continue to work on common goals with the many allies OLRS found on this issue. OLRS also thanks Senator Jeff Jacobson and other legislators who listened to the thoughts and experiences of individuals with disabilities and OLRS' point of view.
Finally, both of these issues demonstrate the importance of having a voice in the legislature, both for OLRS and its clients. It would be easy to take a cynical view and say that people with disabilities and their advocates cannot compete with provider dollars, but that has not been my experience. People with disabilities and their families have one thing the Medicaid providers don't: a vote. As noted elsewhere in this newsletter, legislators do listen to input from constituents. And for a variety of reasons, including having strong feelings about or a personal connection to an issue, they sometimes take positions that can surprise and even seem out of character. It is in those moments that real debate and policy change on behalf of people with disabilities can happen.
This DD Quarterly Newsletter reflects ongoing collaboration among Ohio's DD Partners: the Ohio Developmental Disabilities Council, Ohio Legal Rights Service, and two University Centers for Excellence in Developmental Disabilities: Nisonger Center and the University of Cincinnati, University Center of Excellence in Developmental Disabilities.
The ODDC has decided that, early next year, it will stop publishing the DD Quarterly in printed form. Instead ODDC will begin disseminating the newsletter electronically.
ODDC made the decision to send the DD Quarterly electronically in order to get information to readers more efficiently and to reduce costs. The newsletter will still be published quarterly, and will continue to inform readers about resources and issues that are important to individuals with disabilities and their families, as well as ODDC's position on specific issues that affect their readers.
More information will be available in future newsletters.
ODDC's Outreach Subcommittee publishes a monthly electronic newsletter, ReachOut e-Diversity News. The purpose of the newsletter is to promote interagency collaboration and coordination that result in agencies providing culturally competent services to the unserved and underserved populations in Ohio. The newsletter is available on ODDC's website at http://ddc.ohio.gov.Pub/EDiversity.htm . You can also sign up to receive the newsletter by email at www.omggetsresults.com/oddc/oddc0307/signupform.html .