ODDC - DD Quarterly Spring 2006

Publication of the Ohio Developmental Disabilities Council bringing disability issues and accomplishments to the attention of Ohioans.

DD Council will award over $1 million in new projects

Applicants encouraged to submit proposals for grants to be awarded for 2007-2011

In July, ODDC approved its Five Year State Plan for Developmental Disabilities for the period 2007-2011. ODDC invites applicants to submit proposals for the 20 new projects described in this Notice of Funds Available (NOFA).

Applicants may be for-profit or not-for-profit organizations, individuals, advocacy groups, or associations. Applicants may be experienced grantees or new to the activity, and they may be from any part of Ohio or statewide.

All grant awards are contingent upon the availability of federal funds. The majority of the projects are planned to operate for five years, with funding for each year based upon successful performance the previous year. However, some projects are planned for fewer years, and this is noted in the description.

Application packets

All proposals must follow the guidelines and must address the full project descriptions included in the application packet.

Proposals must show that applicants will provide cash or in-kind “matching” funds of 33.33% in non-poverty areas and 11.11% in poverty areas.

The Ohio DD Council encourages funds to be distributed to a large number of grantees and therefore, has a policy that no grantee shall be the recipient of more than one project at a time unless Council votes to override this policy. This policy, however, is under review and may change.

Therefore, anyone interested in applying for more than one grant should contact Council’s office after September 8, to get clarification of this policy.

Applicants will be notified by November 13 as to whether or not the Grant Review Panel has selected their proposal. Projects are scheduled to begin January 1, 2007.

Bidder’s Conference

At this conference, Council staff will provide overview information about DD Council, the application forms for grants, requirements related to the budget pages and “match,” and breakout sessions about each of the new grants.

To register to attend this conference, contact Tammy Waller, (800) 766-7426, (614) 466-5208, or tammy.waller@dmr.state.oh.us by August 21, 2006.

Project topics

Projects available for funding for 2007-20011 are outlined on the following pages. Visit Council’s website for complete descriptions and instructions.

DD Council seeks proposals for 20 new projects

Each year ODDC will award a one-year grant for a Partners program in one area of Ohio, following the program established by the Minnesota DD Council. It is a competency-based leadership training program for people with disabilities, parents and other family members; curriculum and speakers’ lists are available on Partners website. Grantee also will hold an Annual Gathering of all Partners graduates in Ohio.

One-year mini-grants to increase opportunities for people with disabilities to become competitively employed and/or increase their income. Public and private nonprofit and for-profit organizations, businesses, and individuals in Ohio that have a commitment to promoting employment for people with disabilities are encouraged to apply. Projects may include demonstration, training, advocacy and research.

A five-year grant to enable adolescents and young adults to become more self-sufficient in their medical care, decrease the development of secondary conditions, and help preserve function in the adult years. Trainers will conduct monthly programs to promote hands-on experience in self-care skills development. The first two years of the project will focus on individuals who have Spina Bifida.

A one-year grant to advocate for a Medicaid Buy-In program that will enable Ohioans with disabilities to have both adequate health care and employment. Advocacy efforts should include but not be limited to: educating policy makers, creating public awareness, and training individuals with developmental disabilities, family members and advocates about the need for the Buy-In.

A five-year grant to bring together 60 or more interested collaborators from Joint Vocational Schools, housing boards and county boards of MRDD. Collaborators will attend 2-4 regional trainings to educate them about accessibility. The goal would be that 25% of them would actually build a home for a total of 15 new, accessible homes.

Four to seven, five-year grants will be awarded to applicants that can assist ODDC in coordinating grassroots advocacy efforts throughout the state of Ohio. Centers would: train advocates, coordinate information sharing among the centers and Council, contribute to public policy debate and discussions, match advocates with federal, state and local policy makers, and participate in at least one legislative event per year.

A five-year grant to conduct research, identify new programs and initiatives that promote life-style changes, and improve health care for individuals with developmental disabilities. In the first year, the grantee shall conduct research to determine the issues surrounding illness and medical co-morbidity among people with developmental disabilities. In subsequent years, the grantee will conduct activities based on the research findings to promote lifestyle changes.

A five-year grant for training the following professional groups: developers, landlords, realtors, and architects. Purpose is to make these selected professionals aware of what it means to say “a home, apartment and/or building is accessible” or meets visitability requirements.

Juvenile Offenders with Developmental Disabilities and Victims of Crime Statewide Training

A five-year grant to develop and coordinate a statewide training program that makes systems aware of both the needs of juvenile offenders with disabilities and the needs of victims of crimes that have disabilities. The established Partners in Justice model will be expanded to include juvenile offenders.

A five-year grant to host at least one legislative event at the Ohio Statehouse per year in order to encourage active participation in advocacy. Grantee’s responsibilities: event planning, coordination of participants, production of event materials, scheduling, and other tasks associated with completing the event.

Outreach to Children and Adults with Developmen-tal Disabilities Who are Unserved and Underserved

Five-year grants to assist organizations in conducting outreach to populations not currently being served. Council challenges agencies to build upon their success with the population that they are currently serving by using those techniques to reach out to another group. Example: If you currently serve Latinos with developmental disabilities, you might use grant funds to reach out to Native Americans with disabilities in your community.

A five-year grant to improve the quality of care for children and enhance physicians’ understanding of the child and family’s needs and experiences. Project DOCC (Delivery of Chronic Care) staff will provide materials, conduct initial trainings, and provide ongoing support. Parents become the instructors, teaching pediatricians in-training about the daily realities of caring for children with special health care needs. Grantee must partner with a committed hospital as well as create a team of individuals, physicians, parent coordinators, and administrative assistants.

Project Family: Mentor Families for Parents with Developmental Disabilities & Their Children

A five-year grant to develop and implement a model of service delivery that uses a foster family as a mentor to train parents with mental retardation and developmental disabilities in order to keep the natural families intact. Project will provide needed supports by connecting with community organizations such as county boards of MRDD, childrens services, and faith-based initiatives. Grantee will determine best practice, educational strategies and recruitment efforts and recommend a mentoring model before implementation.

A five-year grant to establish an adult sibling leadership organization that will educate transition-age youth, parents, older caregivers and siblings on emerging self- directed support models, best practices and barriers to self-directed supports, and the value of person centered planning. Grantee must leverage dollars and put in safeguards that will enable organization to be a free standing entity by the end of the project.

A five-year grant to produce and disseminate DD Quarterly four times each year to at least 22,000 readers. Newsletter will inform Ohioans about issues of importance to Council and to individuals with developmental disabilities and their families. Grantee also will be responsible for keeping data base current.

A five-year grant to plan and implement an Annual DD Council Conference to promote awareness of Council and to educate the public, or target audience, about a major disability issue. Grantee also will assist in planning two other events per year. Events include meals, scholarships, documents in alternative formats, and nationally-known speakers.

A five-year grant to develop, print and disseminate materials such as brochures, booklets and posters. Grantee will initiate products designed to attain the desired intent and outcome of Council, as well as produce Council-directed materials, including the Annual Executive Summary.

A five-year grant to replicate DD Council’s current PAS Co-op project in other areas of the state. Provide technical assistance to groups interested in implementing a PAS Co-op that will be owned and operated by people with disabilities and family members. No limits on where PAS can be provided or the type of PAS, as long as it is long term.

A five-year grant to work with OADSP to plan for sustainability of PATHS statewide. Project may include exploring alternative funding sources; connecting with ODJFS, community colleges, vocational schools, nursing schools and work- force investment boards to adopt PATHS curriculum; working with vocational and rehabilitation boards, workforce investment boards, and other providers of education and training to fund training and credentialing; and marketing to the state associations, agencies, providers and consumers to create a demand for certification.

A three-year grant to conduct a statewide training for people with disabilities and others regarding Title II and Title III of ADA, and to provide a “train the trainer” program to train people to provide training in their local communities. and provide training. In third year, Council will provide mini-grants to participants of the “train the trainer” sessions to conduct their own trainings.

Last-ditch effort by advocate at JCARR hearing results in rule changes, preserves home nursing

In a turn that stunned and encouraged many long-time advocates of people with disabilities, the Joint Committee on Agency Rule Review (JCARR) instructed the Ohio Department of Jobs and Family Services (ODJFS) to withdraw the redesigned Ohio Home Care program rules that the department submitted for approval. The program redesign would have expanded the number of waiver slots but reduced the availability of State Plan nursing and personal assistance services.

If the rule changes had been permitted to stand, they would have eliminated access to State Plan nursing services needed by people on waivers that are administered by the Ohio Department of MRDD or the Department of Aging. ODJFS is currently rewrit-ing the rules with more consumer input.

The JCARR hearing at the Statehouse on May 5 was overflowing with advocates, including Mary Hall, of New Albany, Ohio. Hall is the mother of three children with severe disabilities, all of whom receive waiver assistance.

While advocates testified against some of the rules, or submitted their testimony for inclusion in the official record to support waiver expansion, it was Hall’s in-person testimony that captured the attention of committee members.

For over four years, Hall, a former Easter Seal assistant director and lobbyist, had advocated against the rules. She talked and explained what severe problems these new rules would create with ODJFS and ODMRDD staff, and others—to no avail. Then someone suggested she testify at the JCARR hearing.

Because she wanted to make sure she would be heard and understood at the public forum, she researched JCARR and was able to more substantially build her case. She learned that to successfully testify against a proposed rule, she needed to show how the rule was in violation of JCARR’s own four-prong test for review.

According to its website, JCARR was created in 1977 and is made of five State Representatives and five State Senators. In odd-numbered years, the JCARR chairperson is a House member, and in even-numbered years, a Senate member assumes that role.

JCARR’s primary function is “to review proposed new, amended, and rescinded rules” to ensure that:

1. The rules do not exceed the scope of the rule-making agency’s statutory authority;

2. The rules do not conflict with a rule of that agency or another rule-making agency;

3. The rules do not conflict with the intent of the legislature in enacting the statute under which the rule is proposed; and,

4. The rule-making agency has prepared a complete and accurate rule summary and fiscal analysis of the proposed rule, amendment, or rescission.

William Hills, JCARR executive director, says that JCARR provides an avenue for advocates who in turn have to prove specific things. “Advocates must be able to point out to the rule maker that the rule is violating at least one of the four prongs. We can’t hear the ’I don’t like it’ argument.

“As a result of the May meeting, many parties came together to resolve the situation. It shows the involvement of JCARR can be beneficial to everyone,” he added.

“ODJFS was in violation of one of the prongs,” Hall said. “They didn’t have sufficient analysis of what they were recommending.

“We as the consumers were the only ones taking the cut,” she said. “People with disabilities were left on their own.”

Hall demonstrated to the legislators on the JCARR committee that ODJFS did not completely compare the costs that would result from the rules or the risks to the consumers. ODJFS failed to use consumer input when writing the rules. While the legislation did not intend for people with disabilities to become institutionalized, that likely would have occurred were the rules put in place. Hall pointed out that aspect of the rule was a violation of the Olmstead Decision.

“I was pleasantly surprised at the knowledge of our legislators,” Hall said. “They asked the right questions. They just jumped in, and saved our lives and saved our childrens’ lives.” In particular, Hall was impressed by State Rep. Jon Peterson (R-Delaware) for his support of people with disabilities.

Even though there was a big risk of disability-related groups and individuals being pitted against one another as they expressed their particular needs, the committee legislators’ intervention and the willingness of ODJFS to fix the rules avoided that conflict.

“As a result of the May meeting, many parties have come together to resolve the situation. It shows that the involvement of JCARR can be beneficial to everyone,” said Hills.

Mary Butler, chair of the Ohio Olmstead Task Force, also submitted testimony and heard Hall speak. “It was amazing,” she said. “We weren’t there to bash JFS. We knew they were really trying, but it was such a massive undertaking that some of the rules were not very well thought out.”

Janet Miller, associate director of the Cerebral Palsy Association of Ohio, said Hall’s experience with JCARR is a lesson for advocates.

“This process of agency rule review has always been kind of a mystery to people. But it is a resource to people as a means to changing public policy,” she said.

For more information about JCARR, visit www.jcarr.state.oh.us or contact JCARR, 77 South High St., Concourse Level, Columbus, OH 43215, (614) 466-4086.

Check out new Department websites

Ohio Department of Mental Retardation and Developmental Disabilities (ODMRDD)

ODMRDD’s new site presents a simplified and welcoming face to web visitors. The revamped content structure allows site visitors to find what they need in the most accommodating format possible.

Business applications, forms, and a wealth of updated information will be phased in regularly.

The website's overall mission is described as, “...easy-to-navigate, well-organized, and interesting.” And, it will be frequently updated to anticipate the needs of site-users and ensure that they can find needed information.

Ohio Department of Aging (ODA)

“One of the most important things maturing Ohioans should have at their disposal is information,” said Merle Grace Kearns, Director of ODA. “Whether you are healthy and active or you need some help with day-to-day living, our new website will guide you to valuable services, supports and benefits.”

The site provides in-depth information about the Department and the aging network, as well as general information about outreach and aging issues. It also supports other ODA initiatives:

People First of Ohio builds advocacy on new levels

Nearly 2,800 people with mental retardation and developmental disabilities are now members of People First of Ohio, an organization that promotes self-advocacy, empowerment and systems change throughout the state.

The growth and success People First has experienced is evident in both numbers and the level of activities members undertake. The organization was established in 1998, and by 2001 had 1,000 members in 28 chapters. Today, the number of groups is up to 49 chapters in 44 of Ohio’s 88 counties.

People First of Ohio is funded by the Ohio DD Council and the Ohio Department of Mental Retardation and Developmental Disabilities (ODMRDD). The People First Board leads the organization and is made up of 24 self-advocates, six each from four regions of the state.

People First voice becomes stronger

ODMRDD recently tapped the knowledge, skills and abilities of People First members to train people with MRDD and county board staff and service providers. The training will target changes that have been taking place in Ohio regarding Medicaid, waivers, the Developmental Disabilities Profile (DDP), reimbursement and other issues that affect the daily lives of people with disabilities.

“We’re going to be working with the state to put everything about the changes in People First language,” said Sadie Hunter, executive director of People First of Ohio.

“It’s exciting to see People First moving to a new level in training professionals in addition to self-advocates,” said Mary Smithson, DD Council staff liaison to People First.

In late June, a small delegation of People First will travel to Washington, D.C. to meet with Congressional leaders to discuss issues important to Ohioans with disabilities.

What’s most impressive to Hunter, is that a People First member conceived the idea to visit the legislators, and made all the appointments himself. Then he invited his colleagues to attend with him to make an even greater impact.

But that’s how People First operates—it’s driven by the self-advocates themselves. In fact, an MRDD board cannot call to organize a group in its county. That call must originate with a self-advocate, Hunter said.

“People First has a lot of members, and they want to be at the table and they have a contribution to make,” said Smithson. “Policy makers need to listen and consider their input.”

The advocacy trip to the nation’s capital is an indication of the growing interest people with disabilities have in speaking up and trying to make changes in policies and programs. People First members have always made it a practice to attend DD Council’s legislative events, so embarking on their own legislative trip is a natural progression of their work. It will be the group’s first trip to speak with federal legislators.

From the background to the forefront: two People First leaders shine

Linda Kunick, the current board president of People First of Ohio, is the first to admit that the leadership she practices today is a far cry from her silence in the past.

“I was no advocate for myself,” she said. “I always wanted to be in the front of the room, but I didn’t know how to do that.”

“I watched, and I sat quietly…I learned,” Kunick said. When she realized that People First is a group that could help her in everyday life, she wanted to be more involved.

“Now I am the president, but it took a lot of time and a lot of work to get here.”

“Before, I wouldn’t go for it. I would just talk about it. I was a follower. Now, I am a leader,” she said. “People First has taught me to be more independent. I can say ‘no’ when I want to say ‘no.’”

Kunick, who lives with her sister, is a children’s advocate at RHC in southwest Ohio. She also travels and gives presentations about self-esteem and empowerment. Her talks are based on the idea of a caterpillar’s cocoon, and the butterfly that emerges from it.

“I teach people how they can get out of the cocoon and be a butterfly. People First teaches you how to be yourself, and know what you want to get out of life,” said Linda.

Essie Pedersen, a long-time friend of Kunick’s, and one of the people who helped bring People First to Ohio, has witnessed Linda’s progress. “I watched Linda absorb and apply so many of the leadership skills that she’s been exposed to,” she said.

Kunick is making a trip to Washington, D.C. to meet and speak with federal legislators. She is going to teach them how to speak with people with disabilities. “Not to say the bad words,” she said.

Kunick also volunteers annually for a church mission trip to Nicaragua, helping to clothe and house the poor of that country.

John G. Gillespie is one person who knows his rights. For years he worked in a sheltered workshop, shy and withdrawn from others. But that was before he learned about People First of Ohio.

Since discovering the self-advocacy organization, he has become a spokesman and trainer for the rights and responsibilities of people with all kinds of disabilities.

Sadie Hunter, executive director of People First of Ohio, enjoys traveling the state and speaking to groups with Gillespie. “John G used to be known for his autism. Now he’s known for his advocacy.”

Hunter asked Gillespie to teach others with disabilities about their rights and the idea that self-advocacy and independence can be a reality.

“ I first went to our training sessions in Knox County,” Gillespie said of his progression of responsibility within the group. “I’m a trainer now because I know rights.”

He, too, is traveling to Washington, D.C. to meet and speak with elected officials. “I’m going to talk to them about guard-ianships,” he said. It’s something with which he has experience.

When his sister passed away, Gillespie had some housing decisions to make. He could live with others, or he could live on his own as his own guardian. He decided to be his own guardian and went to court to secure his independence.

Something Gillespie doesn’t joke about is his belief that we can all do better as a group in speaking out about rights. For years, one of his pet sayings has been, “We are a TEAM—Together, Everyone Achieves More. The most fun of People First is going to events as a part of the team.”

He said others with disabilities can “live a better life” once they, too, understand their rights as citizens, because, “their rights are the law.”

Gillespie enjoys playing the drums, and has taught children who have autism how to play drums at the YMCA.

For more information about People First of Ohio, e-mail: peoplefirst@rrohio.com; or call, (740) 397-6100; Fax, (740) 397-6188, or write: P.O. Box 988, Mount Vernon, OH 43050.

People First of Franklin County creating quilt

Each second Wednesday of the month for the past nine months, People First of Franklin County calls its meeting to order amid brushes, paint, and frames at the Good Art Studio at Goodwill Columbus.

“We have a lot of fun” Wellman said, “it’s educational, too. We help the group realize they have a voice and that they can make their own decisions about their life and what they want.”

Currently, the collective voice of the chapter members is expressing itself through an art project. Each person is painting a panel that will create a “quilted” effect. The goal is to display the finished piece of about 20 panels in a prominent place and auction it off.

Wellman said the money raised will be used to assist members in attending People First conferences and other events.

Chapter adviser Sam Hoar said the quilt project “symbolizes the diversity and the solidarity of the group.”

Craig Hagarman of Columbus, said, “It means a lot to me. I go to the meetings, and I like meeting people,” as he painted a picture of a limousine for the quilt.

For more information about the Franklin County Chapter of People First, contact Sam Hoar, shoar@teamrms.com, (614) 880-6008.

September 8-9, 2006 Statewide Fundraiser for People First of Ohio

Chapter members will be at local businesses collecting donations to support local activities. A portion will be given to Hurricane Katrina survivors with disabilities.

Quiet, soft-spoken, shy and unsure of herself, is how Nancy’s friends would have described her five years ago. This is not the Nancy we know today.

These days, Nancy is outgoing and determined. She takes part in community activities, visits friends, goes camping, and attends programs that interest her. She and friend Kate organized a Bahama cruise last year and had the time of their lives!

Chris, one of Nancy’s personal assistance providers, attributes this change directly to her involvement with the Personal Assistance Cooperative (PAS) project.

Through a grant from the Ohio Developmental Disabilities Council (ODDC), Linking Employment, Abilities & Potential (LEAP) has assisted consumers in developing consumer-directed personal assistance cooperative systems in Cuyahoga County.

In issuing the grant, ODDC was responding to individuals with disabilities and their families who were asking for increased community-based personal assistance options. Key to the success of this project is the fact that the groups are consumer-controlled.

Consumers maintained control throughout the development and implementation of the project by participating on the planning committee, providing input during community forums, and membership in the co-operative “pods.” The planning committee has continued to provide guidance and oversite.

In developing the system, small groups of interested consumers banded together to form “pods.” Pods provide personal assistance supports to members by allowing them to share PAS providers when they are in need of backup or in one case, for help on the job. For example:

• One person works in a different area than where she lives. She hired a PAS provider from the pod near where she works to help with her personal care needs during her lunch break.

• Another consumer needed extra help when she got out of the hospital. She was able to get the help she needed through the pod.

• One PAS provider in another pod is available for quick tasks, such as helping someone out of bed or making a meal if the regular caregiver is not available.

Lessons learned

• Each pod has it’s own personality and needs. What works for one may not work for another.

• Extensive training programs were offered to consumers and their PAS providers. In actuality, most of the training focused on leadership skill building in the areas of developing managerial skills, problem-solving and communication skills. This training was done primarily on an individual basis.

• Pod members told us it helps if members develop a friendly relationship. They may not know each other in the beginning but it helps to develop a friendly, respectful relationship quickly.

• After spending a lot of time on enrollment forms, most of the pods eventually chose not to use them. Too many forms were overwhelming to members. They thought it was too structured and felt more comfortable with an informal structure.

• Some consumers did not want to join a formal co-op or organization but felt good about joining a sharing group or club. There was no difference in the way the pod was run; only what it was called.

• Pods were kept small, usually no more than 6-8 consumers in a group. In the beginning of the project, one pod member was identified as a coordinator, a person that pod members came to if they had problems with the pod or PAS. We quickly found that each pod needed two coordinators. The co-coordinator could provide backup and assistance when necessary.

• The success of the pod is enhanced if the PAS providers buy into the concept of consumer control and the pod. One pod in particular had difficulty with backup because the PAS providers could not or would not work with other consumers.

This group is in the process of working with a home health agency to develop a pool of aides trained to provide backup specifically for their pod. The agency is one that understands the issue of consumer control and is looking forward to working with pod members.

We have seen many positive outcomes as the project has unfolded. The most gratifying is witnessing the personal growth of the individuals involved in the pods, such as Nancy. It has been rewarding to LEAP staff and others working on the project to see their vision in action.

Gallery hosts reception for Council project

On June 14, 2006, Fresh A.I.R. (Artists in Recovery) Gallery, Col-umbus, hosted an opening of “We Came Out of the Rain Together,” the results of a project funded by a mini-grant from DD Council.

The project provided a group of eight artists with persistent and severe mental illness the opportunity to move out of the private realm of creating artwork and emerge into the world of public display.

The exhibit provided the artists with direct experience in the mechanics of choosing art for display, pricing the work, and learning how to display artwork for a public gallery.

For more information, contact: Myken Lint, (614) 225-0980 x1206 or lintm@southeastinc.com

Ohio mom uses Empowerment Fund to find she’s not alone

David Dow was only ten years old when a massive stroke left him with a language disability called aphasia. Unable to speak, read, or write for months, young Dow continues speech therapy today at the age of 21. Today, he is able to speak again. He is working on writing a book about his stroke, titled Brain Attack. “But, it isn’t easy,” he says.

His mom, Carol Dow-Richards of Eastlake, Ohio found that it was very difficult to find any other people with aphasia. While aphasia affects more than one million Americans, studies show that less than 5% of the population has even heard of the word. This language disability affects more people than Parkinson’s or Muscular Dystrophy.

Young Dow thinks that is because most people with aphasia are unable to advocate for themselves. He has met only one other young survivor over the past ten years.

David’s mom recently attended the 5th Conference of the National Aphasia Association in Boston. There, she met with other families and discovered many new technologies and techniques that can help people with aphasia.

The Empowerment Fund from the Ohio Developmental Disabilities Council helped with her expenses. This fund assists families or individuals with disabilities attend conferences related to disability.

“The best part was meeting other families going through similar struggles. While the conference itself was a learning experience, some of the best lessons I learned, were from talking with other families and knowing we are not alone in this struggle,” she said.

“When my son was in a wheelchair, you could see his disability. But aphasia is an invisible disability. Many people think people with aphasia may be drunk or that they are impaired. With aphasia, the intellect is fine. It is a problem with getting the language out,” shared Dow-Richards.

To find out more about aphasia, visit the National Aphasia Association’s website: www.aphasia.org

For information about the Empower- ment Fund, contact Gary Groom, ODDC, (800) 766-7626, (614) 644-5541, or gary.groom@dmr.state.oh.us

DeWine encourages Ohio to adopt Medicaid Buy-In

US Senate hears tribute to Weisenborn

The following message is excerpted from the statement read by Ohio’s US Senator Mike DeWine on the floor of the Senate, June 27, 2006.

Mr. President, today I commemorate a woman who dedicated her life to helping others: Denise Weisenborn. Living in Parma, Ohio, Denise was a lawyer and advocate of employment and independence for people with disabilities. Denise, who had muscular dystrophy, used a wheelchair all of her life, but never let that stop her from accomplishing her goals. Denise was 51 years old at the time of her death on May 2, 2006.

Denise spent her entire life overcoming obstacles and then exceeding all expectations, graduating as class valedictorian. Denise attended Cleveland Marshall College of Law, where she finished in the top 20% of her class in 1980. She passed the bar exam later that year.

Denise worked in Columbus as an education lawyer for Ohio Legal Rights Services, where she helped families of children with disabilities get the educational services they needed.

She continued to give her talents to help people with disabilities by serving on the Ohio Developmental Disabilities Council, the Governor’s Council on People with Disabilities and the Ohio Rehabilitation Services Commission.

Firmly believing that people with disabilities should be able to live independently, Denise moved from her parents’ home to a federally-subsidized apartment building in Parma for people with physical disabilities and urged officials to build additional homes of this kind.

She was a champion of a program called “Choices,” funded through the Ohio Developmental Disabilities Council, where volunteers provided encouragement and community support to people with disabilities who lived in nursing homes but wanted to live independently in the community. As a result of her leadership, hundreds of Ohioans with disabilities are now living independently in community settings.

Mr. President, Denise was a gifted lawyer. She volunteered her talents to non-profit agencies that helped people with disabilities. And she lobbied the state and federal government for the betterment of people like herself.

For all these efforts, this attorney with 26 years of experience earned about $5,000 per year. It is a sad irony that although Denise was learned in the law, it was the law—and not her disability—that kept her from earning a living.

For Denise, however, having a low income was an act of survival. Denise’s health care was covered by Medicaid. Denise had muscular dystrophy. It affected her speech; her voice was soft and quiet, making it difficult to hear her in a crowded room. She relied heavily on assistive technology for independence. She used a power wheelchair for mobility and operated her computer by pointing a laser at an onscreen keyboard. She required 24-hour personal attendant care and too frequently her life was interrupted by extended and expensive stays in the hospital when her health declined.

Given the severity of her disability, there were no other options for her. The law in Ohio prevented her from earning more money without losing her health care. She was given a difficult choice—she had to choose between making a living and living at all.

Mr. President, this is why Denise Weisenborn spent the last years of her life fighting for a Medicaid Buy-In program in Ohio. These programs, allowable in states under federal law since 1999, give people with disabilities the right to earn more money, and pay premiums to the state to help cover their health care costs. Medicaid Buy-In removes the powerful, institutional disincentive for people with disabilities to work.

If Ohio had a Buy-In program, Denise Weisenborn could have been even more independent by earning a living, helping Ohio cover her health care costs, and paying taxes. Simply put, she could have been a lawyer. It is the independence for which she fought and wanted so deeply, and it is a shame that Ohio did not give her that chance before she passed away.

I urge the state of Ohio to introduce a Medicaid Buy-In bill this year, so that Ohio—and America—can receive the full gifts of people like Denise Weisenborn.

Did you know?

According to the U.S. Census Bureau, median annual earnings were $22,000 for people with a nonsevere disability and $12,800 for those with a severe disability. These amounts compare with $25,000 for people without disabilities.

This statistic is taken from the Survey of Income and Program Participation, released by the U.S. Census Bureau on May 12, 2006. For more information on this survey, visit: http://www.census.gov/Press-Release/www/releases/archives/ aging_population/006809.html

News from Ohio Legal Rights Service (OLRS)

OLRS provides conflict resolution training

Have you ever experienced a conflict at work? With a family member? With a service provider or business?

Conflict is normal. Everyone experiences conflict in his or her life. Conflicts are bound to happen and happen often. Conflict is not bad, in fact, some view it as an opportunity, but when it is mismanaged, it can threaten organizations and relationships.

Conflict resolution is a nationally recognized and recommended approach used in private and public service entities. Conflict resolution involves bringing people together to address a problem using a specific set of skills and strategies. The goal of conflict resolution is to achieve a productive result that the people on both sides of the issue or problem accept because they were actively involved in shaping the outcome.

Ohio Legal Rights Service (OLRS) recently developed a comprehensive training in conflict resolution. The training provides an intensive review of communication and mediation skills and strategies needed to resolve conflicts effectively.

This training, initially designed for staff and administrators employed in mental health facilities, has a broad range of applications for all work place settings. As of July 2006, OLRS has provided training to over 250 staff at public and private facilities throughout the state of Ohio. The trainees included nurses, psychologists, social workers, administrators, police, direct care staff, and therapists.

Patrick Washburn, a seasoned mediator with eight years experience with the Columbus City Prosecutor’s Office (Night Pros-ecutor Program) and 12 years at OLRS as an Ombudsperson, developed the conflict resolution training. Mr. Washburn designed an interactive, hands-on training approach that includes an understanding of the basic tools available to resolve conflict between two parties. Training time is allocated for practical experiences so participants can refine their newly learned resolution skills.

A fee for training has been established and continuing education credits are available. To learn more about hosting this effective, one-day (8 hours), staff training, contact Ohio Legal Rights Service at 1-800-282-9181 and speak with Patrick Washburn.

OLRS litigation update

Jackie S. v. Connelly—In addition to seeking class certification, OLRS settled a motion for preliminary injunction and has moved for partial summary judgment in this case.

In this case OLRS represents people with disabilities adversely affected by the revised training rule issued by the Ohio Rehabilitation Services Commission. OLRS maintains, among other things, that the part of the rule that calculates the amount of tuition RSC will pay for college students is in violation of federal law.

As tuition comes due for fall term, OLRS will be advising clients regarding their options, including appeal of any denial of tuition assistance where the calculation is made using a parent’s income.

G.D. v. Riley—OLRS has filed a motion asking the court to certify a class in this case challenging the failure of Ohio Medicaid to implement fully the federal EPSDT (Early Periodic Screening Diagnostic and Treatment) requirement for children.

Martin v. Taft—After several months of intense activity, dis-covery in this case, which seeks to enforce the integration mandate of Title II of the Americans with Disabilities Act and section 504 of the Rehabilitation Act, is complete.

Motions must be filed by July 21, 2006 and a settlement conference with the judge is scheduled for September 12, 2006. Trial is set for October 23, 2006.

OLRS continues to work on behalf of children with special education needs

Protecting the rights of eligible children with disabilities to receive special education in the most integrated setting appropriate to their needs is one of OLRS’ busiest service areas.

Assistance with and advocacy for special education services continues to be among OLRS’ most requested services. In FY 2005 special education comprised 15% of OLRS’ case problem areas; OLRS addressed nearly 600 special education issues in individual cases.

In addition to its individual case work, OLRS is focusing its special education advocacy in two programs with the shared goal to improve services for the underserved:

OLRS and Columbus Public Schools partner to improve services to children with traumatic brain injury (TBI)

In Ohio, every year 3,750 children sustain a TBI with 450-600 of those injuries in the moderate to severe range. Yet the number of children served in Ohio’s schools under the TBI category is low and has not kept pace with the incidence of TBI.

As part of its on-going efforts to advocate for children with TBI, Ohio Legal Rights Service is partnering with Columbus Public Schools (CPS) to pilot a project to better identify and serve children with TBI in schools.

CPS is a large, urban school district located in Columbus, Ohio, serving over 64,000 students. The pilot project will start with the 2006-2007 school year. It is structured to increase the identification of students with TBI and to increase awareness about TBI among school personnel.

Components of the pilot include a screening/identification process, training for CPS staff, the development of awareness materials for staff and families, and data collection.

To begin the project, CPS has designated one of its school psychologists to spend half of her time working on TBI issues. This school psychologist will be the CPS point person for the pilot.

A screening tool has been developed to locate and identify children in the district who may have a TBI. The tool will be used at the CPS Special Needs Preschool, during kindergarten screening and as a part of any special education referrals.

OLRS will provide training on TBI to CPS school psychologists, nurses, parent mentors, aides and child-care providers. Personnel receiving training will be surveyed before and after training about their awareness and knowledge of TBI.

OLRS will develop awareness materials including brochures and posters to be disseminated in all CPS schools and feeder sites.

Baseline data will be established for numbers of children referred and identified under TBI, numbers of children with TBI receiving services, and pre-training/post-training awareness and data will be collected during the project to measure the effectiveness of this pilot project.

OLRS and the McDonough Center at Marietta College partner to improve educational services to children with disabilities in Southeast Ohio

In an effort to provide outreach to a traditionally underserved area of the state, OLRS is partnering with Marietta College to help meet the needs of families in the community who have children with disabilities.

OLRS will provide direct assistance to families of children with disabilities through counseling, negotiation with school districts, and other representation in special education matters.

OLRS is providing on-going training to parents on special education topics including special education rights and the law, negotiation skills and writing a good individualized education program (IEP).

Marietta College’s McDonough Center for Leadership and Business is providing office and meeting space and student interns to assist with this partnership. Student interns are assisting OLRS in disseminating materials about the partnership, scheduling trainings and providing training support, and assisting families in accessing OLRS services.

OLRS advocates for increased services for child with behavioral issues

As part of its work in Southeastern Ohio, OLRS represented a child with behavioral issues whose school schedule was decreased to a half day due to the school’s inability to meet the child’s behavioral needs. In addition to the decreased schedule, the child was frequently sent home due to behaviors. OLRS negotiated for a behavior intervention plan, the services of a one-to-one educational assistant, and a full day schedule for the child.

OLRS provides assistance to local attorney who represents children with disabilities

In an effort to strengthen services for families in Southeastern Ohio, OLRS is working to provide technical assistance to local advocates so that families will have access to advocacy services in their own communities.

To this end, OLRS has provided training opportunities and individual technical assistance to a local attorney who represents children in special education matters. OLRS will continue to work with local advocacy resources to build a system of local supports for families of children with disabilities.

Emergency preparedness, response and recovery

The following article was written by Maureen Crossmaker, Ohio Legal Rights Service. Maureen attended the “Working Conference on Emergency Management and Individuals with Disabilities and the Elderly,” June 28–30, 2006.

People with disabilities fared poorly during the hurricanes that ravaged the Gulf Coast in September 2005—22% of New Orleans evacuees reported they were physically unable to leave and 23% reported they stayed to care for someone who was unable to leave. Together, these two groups of people who could not physically leave or who stayed to provide care represented 38% of the 680 adult evacuees surveyed by the Kaiser Foundation.

Older adults and people with disabilities were disproportionately affected by the hurricanes and by the response; many died and other people who had lived independently are now in nursing homes and other of institutions.

Hurricanes Katrina and Rita were catastrophic events, as were the events of September 11th and Oklahoma City. Natural and human-engineered disasters of all causes and magnitude occur. Some are predictable, others are not.

One critical lesson learned from looking back on past emergencies is that government at all levels and the private sector must integrate the needs, expertise, experiences and skills of individuals with disabilities as emergency planning progresses.

Ohio’s DD network partners, Ohio Legal Rights Service, DD Council, the Ohio State Univer- sity’s Nisonger Center and the University of Cincinnati UCEDD, are collaborating to plan for emergency management with people who have disabilities.

Federal agencies facilitate forging necessary alliances

The federal Administration on Developmental Disabilities (ADD) and the U.S. Department of Homeland Security (DHS) took on the challenge of emergency planning with people who have disabilities and older adults.

In late June, 2006, ADD and DHS held a three-day “Working Conference on Emergency Management and Individuals with Disabilities and the Elderly.” Governors sent delegates representing their state emergency management, health, aging, and disability agencies. In addition, each state’s DD network partners were asked to choose a delegate to represent the network.

More than one hundred non-delegates also attended representing federal government departments and non-governmental organizations (NGOs).

ADD’s Commissioner Pat Morrissey, and DHS’ Officer for Civil Rights and Civil Liberties, Daniel Sutherland, chaired the invitational meeting.

Underscoring the importance of this working meeting, they were joined by national leaders, among them, DHS Secretary Chertoff, FEMA Director Paulison, Assistant Secretary of the Administration on Aging, Josefina Carbonnell, DHS Deputy Under Secretary for Preparedness, Robert Zitz, the Center for Disease Control’s Dr. Tony Cahill, and the Executive Director of the National Disability Rights Network, Curt Decker. With other subject matter experts, they spoke about data resources, emergency planning tools, transportation, evacuations, shelters, housing, medications, durable medical equipment, and restoring services.

While this meeting was taking place, historic rain storms caused severe flooding in much of the Northeast and Mid-Atlantic, caused several deaths, and forced evacuations of thousands of families. A number of delegates returned home to respond, and the weather emergency made it difficult for others to get to and participate in the meeting.

The backdrop of floods and evacuations was a constant and sobering reminder about the reasons why the meeting had been convened, and reinforced the urgency of the matters at hand.

Top experts from state and local governments and the private sector addressed the delegates during morning sessions. State delegations worked independently after lunch, followed by discussions with other states by FEMA regions. Experts were available when delegates had questions or needed in-formation on various topics. The last afternoon each FEMA region shared reports with all conferees. The following daily summaries cover highlights of the state, regional and federal discussions.

Day 1 – Preparing for emergencies

In Ohio, floods, tornadoes, earthquakes, heat waves, blizzards, and chemical spills are most likely to cause emergencies. Potential large-scale emergencies include pandemic flu, nuclear incidents, or massive evacuations from other states.

• Providing useable information about developing good personal emergency plans,

• Encouraging qualified people with disabilities to train as first responders, and

• Addressing the accessibility of warning systems, transportation and shelters.

People with disabilities, like everybody else who can be affected by an emergency, should have personal emergency plans. State preparedness must not be based on the development of “special plans” for “special populations;” rather, plans must address the needs of all types of people.

The accessibility of warning systems, for example, tornado sirens and weather reports, as well as the accessibility of shelters were topics of much discussion. State teams also understood the need to find out about and plan for accessible transportation.

Training and other information needs were identified. Many first responders are not aware of disability related matters, including how to safely evacuate individuals with disabilities in ways that do not compromise dignity and autonomy.

Registries were much debated throughout the meeting. Registry proponents highlighted their value because they allow first responders to know where individuals live, how to get into their homes during an emergency, and about individual abilities and needs. Issues of concern include liability, the cost of upkeep, keeping the data current, responsible entities, how the data will be stored, and when and if data can be accessed.

Day 2 – Making it through emergencies

Emergency response must include responding to the unique needs of individuals with disabilities and older adults.

Knowing where accessible transportation is located, who it will accommodate, and how to requisition it during an emergency, are critical to assuring that all people are safely evacuated.

Significant lessons about transportation were learned during the Gulf hurricanes. People were put on inaccessible transportation, for example, and dragged onto vehicles. People were put in vehicles that were not equipped to meet their critical needs, for example, lack of a generator to keep essential equipment functioning or air conditioning for people with fragile health. Others had to use multiple transportation systems, for example, changing buses several times with long waiting periods in between. Problems with transportation caused deaths and serious health problems.

Trouble getting medications was another contributing factor. Many people were not evacuated with their assistive technology, including wheelchairs and walkers. Some shelters would not admit people with service animals.

Using functional assessments based on individuals’ strengths, needs and supports will address the unique needs of individuals with disabilities.

Good planning and training are essential to effective emergency response. Public trust in that planning is also an essential factor in whether or not people will heed warnings to take cover or evacuate. People must have information, believe the threat is real and think that shelters will accommodate them, or they will not evacuate.

All people who can plan for emergencies should do so. The first 72 hours following an emergency are critical for search and rescue operations, and people should be prepared to take care of themselves to as great a degree as possible for those hours. Prior rehearsing of personal plans will be invaluable during a real emergency.

Individual responsibility for emergency preparedness and response is a possibility, but not for all. Some people will not be able to act on their own in an emergency; their needs must be included in state and local emergency planning and acted on during emergencies.

Day 3 – Recovering together

Good planning and communication among state and local emergency management personnel and the disability community are essential because people with disabilities are at-risk during emergencies and in the recovery phase.

Some people with disabilities may choose to train to become first responders, and others will want to work locally to help make sure that people make and practice personal emergency plans, train first responders on disability related matters, see what types of warning systems exist to be sure that everyone learns about the emergency, and to work on other local initiatives around planning, for example, the accessibility of shelters.

Accessible and affordable housing is a challenge in the best of times. In the aftermath of a disaster, this will likely be more challenging. In the aftermath of the Gulf hurricanes, people with disabilities who had lived independently or with community supports were put in nursing homes and remain there today.

For some, every day is an emergency

While the topic of this important meeting was emergency management, Ohio’s delegation affirmed that every day life is an emergency for numbers of individuals with disabilities and families. Providers don’t show up when scheduled, assistive technology devices fail, medicines are unaffordable, service animals may change, people get ill and have hospitalizations, people are homeless or live in homes that are dangerous or are not accessible, and families are hungry. Other individuals and families live marginal lives where their fragile network of support can quickly unravel with disastrous results.

Ohio and other teams were very vocal that at the federal, state and local levels, more must be done for the many individuals and their families who face continual emergencies. While the nation is now focused on emergency preparedness and disaster recovery, re-sources must support children and adults with disabilities and their families to have equal opportunities to live, go to school and work, and be parts of neighborhoods.

Funding

As well as advocating for greater everyday supports for individuals and families, Ohio and other state teams were very vocal about the need for funding to support state and local initiatives to include people with disabilities and older adults and their families in state and local emergency preparedness.

Federal grants and other dollars are generally given to FEMA, state emergency management agencies, and non-governmental organizations like the Red Cross.

The DD Network and other disability and aging stakeholders understand the imperative need to include people with disabilities and older adults in all phases of emergency preparedness, but cannot do so as an unfunded mandate.

Next steps

This Emergency Management Meeting was groundbreaking, and began important conversations at the federal, regional and state levels about the necessity for emergency planning experts and disability and aging communities to work together so that individuals, families and communities are ready for emergencies and participate actively in recovery.

The meeting was designed to facilitate discussion among the Governor-appointed state teams, to encourage states to develop new partnerships for Emergency Management planning and training, and to facilitate discussions and planning with NGOs.

Emergency Management is a continuous process of assessing potential risks and threats, making plans based on evolving risk assessments, and working to integrate emergency planning at all levels of government with the involvement of NGOs. Planners and first responders from state and local Emergency Management agencies have awesome responsibilities and must assert a high degree of control during incident response.

People with disabilities and families have struggled over decades for community inclusion, independence, autonomy, self-determination, and to exercise their civil and human rights—in short, to have what they need to live a life equal to people who do not have disabilities.

Assertion of autonomy during an emergency may not be highly valued by first responders. This meeting afforded a great opportunity to begin the communication necessary to bridge understanding among emergency management and the disability and aging communities.

Commissioner Morrissey and her staff are compiling a report with the proceedings of the Emergency Management Meeting and will make them available. Governor-appointed state teams returned home with ideas to develop next steps.

Building on momentum: statewide, local and individual planning in Ohio

The Ohio delegates to the ADD-DHS working conference have scheduled a meeting in July to continue planning. The team will build on the foundation of practical tasks identified during this meeting.

A lot of information already is available on the many topic areas to be covered. The Ohio team working on emergency preparedness will sift through and adapt existing materials for our state. For example, there are a number of preparedness checklists that include functional assessments.

Providing a checklist that individuals/families can use to create disaster response plans, and encouraging people to practice their plans, will generate awareness and self-reliance, and solidify individuals’ support networks.

We will build on—not reinvent —the great work that already exists, and state delegations from across the country also will be sharing products and ideas.

The most critical tasks are to provide individuals with disabilities, older adults, and their families with easy to understand information they can use and practice, and to find ways to support and publicize local emergency preparedness, response and recovery initiatives that include people with disabilities and older adults in planning, practice and evaluation. Also under discussion is how to work with local shelters about accessibility and meetings the needs of people with disabilities and older adults.

The Ohio team and the DD partners need the thoughts, experiences, input and review of the disability and aging communities to be successful. Specifically, we need people with disabilities, older adults, their families, others providing supports, and subject matter experts (disability, aging, emergency management, healthcare, transportation, etc.).

Family Opportunity Act booklet available

In May 2006, Ohio Legal Rights Service produced a booklet about some of the programs enacted within the federal Deficit Reduction Act. The booklet, titled Family Opportunity Act, highlights provisions of particular importance to children with disabilities and their families, including:

The Family Opportunity Act is a new optional eligibility category which will allow states to expand Medicaid coverage to children with disabilities up to age 18, who would be eligible for SSI disability benefits but for their income, who are in families earning up to 300% of poverty.

New publication about children’s rights in community service on website

OLRS has authored a new booklet that tells about your rights in community services for children and their families, and how to guard and advocate for those rights. OLRS wrote the guide for families under a subcontract with the National Alliance on Mental Illness (NAMI) of Ohio.

The guide, titled, Children’s Rights: The Rights of Children and Their Families Who Need or are Receiving Community Services, provides information about the rights of children in Ohio’s major child-serving governmental service systems: mental health, substance abuse and addiction treatment, education, child welfare, MRDD, and juvenile court’s unruly and delinquent youth services.

The intent of the Children’s Rights guide is to clarify the role of parents, guardians, and custodians and help them better understand their rights and their child’s rights so they can advocate for these rights. By knowing their rights and understanding their responsibilities, families may become more involved in the service system and be proactively engaged on behalf of their children

The guide is available on the following websites: www.mh.state.oh.us/, OFCF: www.ohiofcf.org, http://olrs.ohio.gov/ASP/HomePage.asp, and www.namiohio.org/. Print copies of the guide are available from NAMI Ohio, Ohio Legal Rights Service, or Ohio Department of Mental Health.

Student raising awareness and funds for accessible playground

If you want to know about playground accessibility, ask Justin Martin, of Hilliard, Ohio.

He’s an eloquent, ten-year-old, third grade Hilliard Crossing Elementary School student who has cerebral palsy and uses a wheelchair. He also is an advocate for himself and others as he tries to raise $30,000 for an accessible, rubberized surface for the school playground.

In 2004, when Hilliard Crossing decided to revamp the existing playground, little thought was put into accessibility so that children with disabilities could play alongside their classmates.

Justin and his mother, Jackie Martin, an advocate who works for the Cerebral Palsy Association of Ohio, spoke to officials back then about the need for an accessible surface on the play area.

“I just want to be treated like any other kid and be with my friends,” said Justin.

The Hilliard School Board decided to forego a rubberized surface for part of the grounds, and instead added one $18,000 accessible piece of equipment at each of its 12 elementary schools. However, at Hilliard Crossing, the equipment is located away from the main play area. The school’s parent teacher organization also purchased a piece of equipment, but it is surrounded by mulch and is so inaccessible it is not used by anyone, Justin said. “It’s like a ghost town,” he added.

When more improvements were made to the playground, the Martins were shocked to see that the area had been elevated by 12 inches and surrounded with railroad ties, rendering it completely inaccessible. Eventually, a cement ramp was added but there is no accessible pathway leading to it.

On the last day of school in 2005, the school principal told the Martins that board officials granted them permission to raise the funds for a rubberized surface, but that no money would ever be provided for its upkeep.

“I was very happy that they said go ahead and raise the money,” Jackie said. “But I still felt like they weren’t fulfilling their obligation to make the playground accessible.”

The Martins have consulted with a New Albany, Ohio-based playground vendor who has a child with a disability. Unlike other vendors they spoke with, he understands the accessibility issue and suggested the creation of “social pockets” and strategic grading and pathways on the playground to facilitate easy access.

In April, 2006, Justin and his parents attended the Hilliard School Board meeting. Justin read an essay he wrote about accessibility,and invited the board members to the “Dash for Disabilities” event at The Ohio State University campus.

The Student Council for Exceptional Children, a group of OSU students studying disabilities, coordinated the Dash and donated $500 to the playground.

To Justin’s surprise, the Hilliard Crossing Elementary Student Council donated $500 and Columbus Children’s Hospital donated $1,000. The Martin’s are researching other grants and funding opportunities.

“It kind of makes me happy we’re doing this, so future kids don’t have the same old battle,” Justin added.

ADA Award Honoree

The Ohio Developmental Disabilities Council and ADA-OHIO presented the 2006 ADA Award to David Cameron at the annual Multiple Perspectives conference, April 17, at The Ohio State University. Pictured below is Cameron, who recently retired as ADA Coordinator from the Ohio Rehabilitation Services Commis-sion, and his wife, Lori Lampell.

UCP Releases Medicaid Part D Guide

United Cerebral Palsy (UCP) has released a guide for Medicare beneficiaries with disabilities, friends and family members, benefits counselors, physicians and services providers, disability organizations, and others who seek to assist individuals in accessing the prescription drugs that they need.

Navigating the Medicare Part D Prescription Drug Coverage Program identifies action steps for advocates for an individual's own prescription drugs and other service needs.

The guide is prepared by Jeffrey Crowley of the Health Policy Institute at Georgetown University, with consultant Bob Williams.

The guide is available at http://www.ucp.org/ucp_generaldoc.cfm/1/9/10020/10020-10020/6655.

My Life Book: Future Planning for People with Developmental Disabilities

Over 20 Ohio families participated in the research and development project funded with a grant from the National Institutes of Health that resulted in this book.

Parents of children with developmental disabilities can use this program with their child to create a record of important information and as a planning tool for the future. Siblings can be active participants. And a group leader or instructor can use it to teach a class on future planning.

The video follows the stories of four families as they attend a future planning class and begin the pro-cess of making important life decisions. They are shown interacting with family, friends and employers as they establish a support network, arrange appropriate housing, explore leisure options and make legal arrangements. Includes:

Includes a personal fill-in-the-blank scrapbook, printable from the CD-ROM or available separately. Once completed, it provides an introduction that includes pictures for caregivers, relatives, or new friends and acquaintances. The second portion focuses on planning for the future.

$70 DVD, CD-ROM and Activity Book. $40 DVD and CD-ROM only. $35 Activity Book Only. IRIS Media Inc., 258 East 10th Ave. Suite B, Eugene, OR 97401; (877) 343-4747; www.lookiris.com

The 411 on Disability Disclosure: A Workbook for Youth with Disabilities

National Collaborative on Workforce and Disability

Based on the premise that disclosure is a very personal decision, this workbook helps youth and adults working with them learn about disability disclosure.

It does not tell young people what to do. Rather, it helps them make informed decisions about disclosing their disability—decisions that will affect their educational, employment, and social lives.

• Want to understand yourself, your disability, or explain your disability to others;

• Have decided to disclose your disability but feel unprepared or uncomfortable with this challenge;

• Wonder if disclosing your disability could improve your educational, employment, and social life.

Includes examples of young people struggling with the question of “to disclose” or “not to disclose.”

99pp. Free. Download in PDF or MS Word: www.ncwd-youth.info/ resources_&_publications/411.html or request a print copy by email: publications@ncwd-youth.info

NCWD/Youth, 4455 Connecticut Ave. NW Suite 310, Washington, DC 20008 (877) 871-0744v; (877) 871-0665 tty.

Working with Parents Who Have Cognitive Limitations: Guidance for Teachers, Nurses & Social Service Providers

Research suggests that there are approximately one million parents in the U.S. who have cognitive limitations. As a provider of educational, health or social services, it is probable that one day you will be involved with a child whose parents have cognitive limitations.

This program will help you recognize when parents might have cognitive limitations, communicate effectively with parents, and maximize appropriate and beneficial conditions for the parents’ children

$85 DVD and supplemental materials. IRIS Media Inc., 258 East 10th Ave. Suite B, Eugene, OR 97401; (877) 343-4747; www.lookiris.com

Plan While You Can: Legal Solutions for Facing Disability

Easy to read guide to help craft an individualized solution to planning for the possibility (or reality) of disability. It gives you tools to:

“Perhaps one of the most valuable functions of the book is that it shows the reader how many different parts are involved in planning when disability is involved. I would recommend this book, but keep in mind the need to consult an attorney who can let you know the law in Ohio,” says David A. Zwyer, Executive Director, ODDC.

134 pp. $11.25 plus S&H. AuthorHouse, 1663 Liberty Dr., Bloomington, IN 47403. (888) 280-7715; www.authorhouse.com

Going to College: Expanding Opportunities for People with Disabilities

“A comprehensive, readable, and much-needed guidebook for the growing numbers who have set their sights on going to college.” Madeleine Will, National Down Syndrome Society and former Asst. Secretary, US Dept. of Education

Disability service coordinators, guidance counselors, administrators, general and special educators, families, and parent resource centers can use this resource to:

• Help students select a college, determine eligibility for services, and make other preparations

• Promote students’ self-determination and self-advocacy throughout their college careers

Includes chapters on: Universal Design for Instruction, students with disabilities who attend professional schools, self-determination, and transition from postsecondary education to career or post-postsecondary education.

314 pp. $34.95 plus S&H. Brookes Publishing Co., PO Box 10624, Baltimore, MD 21285-0624; (800) 638-3775; www.brookespublishing.com

A Meeting of Minds: Part 2

Survivors and providers meeting the challenges of domestic violence and abuse of people with disabilities

You are invited to join your peers—individuals with disabilities, family members, service providers and professionals—in building upon our understanding of the unique dynamics of disability and violence, and to identify next steps in working collaboratively to address this issue.

Michelle Schwartz and Lee Ann Cameron of SafePlace, Austin TX will provide presentations and workshops.

SafePlace has provided education, intervention and counseling services to survivors of sexual abuse, domestic violence and caregiver abuse. Trainings include disability awareness, sensitivity, outreach strategies, establishing accessible crisis services, and ensuring access to criminal justice systems.

DD Quarterly Spring 2006