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DD Quarterly Fall 2003

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Medicaid Waiver Redesign: The Herding of Cats

Most people directly involved in home and community-based services Medicaid Waiver redesign efforts over the last several years agree at least on one thing..trying to get the diverse people and groups, each with their own special interests, to agree on how to implement the provisions of House Bill 94 to expand the availability of improvements to the MRDD service delivery system through federal Medicaid funded services has been like "herding cats." Just picture trying to "herd" a bunch of cats all the same direction so that they end up in the same space, and the challenges and frustrations of Medicaid Waiver redesign come into focus.

When added to the complexities of such a broad reform movement, the question of who will control the dollars available with expanded Waiver programs makes the situation even more volatile; and in too many cases, self-serving. And when the "cats," especially the powerful ones, resist being "herded," the claws do come out.

The task confronting the many stakeholders in redesigning and refinancing the MRDD service delivery system has been monumental, but very essential. All of the stakeholders undoubtedly share a genuine concern to see that people with MRDD and their families have more of the supports they need to live quality lives in their communities. For decades this shared goal has been based on principles of keeping people in their own homes or other community-based settings, self-determination, relevant need-based services and supports, and responsible fiscal management.

Many participants in and observers of the waiver redesign process acknowledge, however, that those ultimately invited to sit at the designing and implementing table seem unable to resist the temptation of pandering to their own vested interests more than to the needs of those with less voice and power-people with developmental disabilities and their families. The people most effected by such reform are forced to watch professional stakeholders argue and stonewall, even litigate one another.

And all the while, the wheels of governmental administrative rule-making lumber along, often caught in the mire of the stakeholder battles. Perhaps stopping to glance for a moment at the vision embraced at the beginning and the reality of today will provide some clarity and optimism about the gains that have been accomplished and a future that is still possible.

The vision

The mounting waiting lists for community-based services in the late 90s provided the motivation for making some radical changes in delivery of supports and services for people with developmental disabilities and their families. Even with an initial pool of Medicaid Individual Options (IO) Waivers, Supported Living funds, and Family Resources dollars, much more was needed as waiting list numbers were soaring.

So, Ohio’s DD Council organized a Waiting List Coalition that began to s provisions in HB 94, the 2002-2003 budget that would enable Medicaid Redesign and expansion of Medicaid Waivers to more people. The excitement of the MRDD community ran high in 2001 as a vision developed for what the new system might look like. Two new waivers would be created; one for Family Support services and one for people with more intensive needs, with a goal of June 2003 to end the Residential Facility Waiver (RFW).

The vision also included an eventual redesign of the Individual Option Waiver to serve those "in between." By 2006, the different waiver programs would become one single waiver for all people with MRDD.

The vision suggested an additional 500 people per year for the next two years would be served through these waivers. Waiting lists for services would begin to shrink, providing expanded services beyond the original Family Resource Services Program, such as environmental modifications, specialized and adaptive equipment, adult day habilitation, and supported employment services.

The vision included service improvements like free choice of providers, freedom to move from county to county with assured continuity of comparable services, ability to designate a person to assist with coordination of services, funding for increased wages for residential staff, and improved investigation of abuse, neglect and other unusual incidents.

Where we are today

In the last two and a half years, the good news is that IO Waivers have increased from 2,800 to over 10,000. As of July 31, there were 7,304 people with IO Waivers, and 2,937 with Residential Facility Waivers.

One concern of advocates is that only 25% of the last 4,000 approved IO Waiver slots have been given to new people, as the bulk have been the refinancing of those already being served.

The original plan to eliminate Residential Facility Waivers have been scraped, and in fact the RFW program is being renewed. Supported Employment and Adult Day Habilitation services were dropped from waiver re-design because of controversy that developed, as the costs became too high.

To retain existing support staff, $9.7 million has been given to residential providers. And an abuse and neglect investigation process at the county board level has been developed. It is working so well that Centers for Medicare and Medicaid Services has Ohio’s Incident Tracking System featured on their website.

The new Level 1 Waiver has been approved and initiated, and most of the rules implementing the waiver are in place, despite delays due to stakeholder battling and the challenges of coordination between state agencies. The Level 1 Waiver provides up to $5,000 a year to individuals or their family for services like Personal Care/Homemaker, Respite, Transportation, Emergen-cy Response System, Specialized Medical Equipment and Supplies, Environmental Accessibility Adaptations, and Emergency Assistance.

Rules have been set forth that aim at making the Level 1 Waiver more fairly consistent across counties in Ohio. County Board programs with higher tax revenues had set the bar too high for poor counties through their IO Waivers, granting dollars and services to people that poorer county programs could not match. Inequity of distribution of available waiver dollars grew, and federal requirements demanded a more equitable system across counties-thus, the Level 1 Waiver.

Level 1 Waivers will make services provided by the previous Family Resources Program, especially respite services, available to many more people for more hours. With all the good intentions built into the Level 1 Waiver, as of early August only 16 people had been enrolled, with only seven individual providers and 86 agency providers certified.

This is where the attempts to "herd the cats" began to bog down the Level 1 progress. In fact, the Joint Committee on Agency Rule Review (JCARR), currently considering rules to implement statewide standards for contracts between County Boards of MRDD and providers, reimbursement fee schedules, and other system changes, has said that if major differences persist, the rules could be pulled from JCARR’s agenda.

Added to the problem of special interest not being able to agree to rule details, is the inequity of representation at the table. The Executive Branch Committee (EBC) was established by H.B. 94 to oversee and monitor the implementation of the Medicaid Redesign process, and was to include an equal representation of providers and people with MRDD and their families.

"Equal representation" became translated as mostly professionals, including state officials, professional representatives of residential and county board providers, and one professional advocate - with one person with a developmental disability and one parent advocate rounding out the EBC.

The notion of equity of representation gets somewhat lost for many observers when professional service deliverers (or their representatives) so markedly dominate the power at this table of design and decision. That dominance goes beyond numbers to the professionals’ strong politically organized and well-financed networks of constituents determining what needs to come to the table. Many express the view that one person with a disability, one parent and one professional advocate from just one "consumer-based" network falls short of equal representation. There need to be more such networks of people with disabilities represented at the table with direct input from those who actually are eligible to use the services.

No one questions the integrity of any of the EBC members trying to carry out this massive and difficult task. But good intentions and professional competency simply cannot take the place of the experience of living with a disability. Clearly, more of their direct voices are needed. In most cases, it becomes nearly impossible for professionals with vested financial interests to lay those interests aside for the sake of those they are to be serving as they make such monumental decisions.

Collaboration seemed to go pretty well during the early phase of proposing statute amendments, but individual interests seemed to take over when the detailed rule-writing began.

And that bickering mirrors what is happening more broadly throughout the MRDD community. While the last set of major redesign rules has been under review by JCARR, litigation and raging battles around the EBC table have plagued the process, with stakeholders believing that they must protect their own interests at almost all cost. JCARR insists that if the disagreement continues, the rules process will inevitably slow down, if not stop all together.

What now?

One developmental disabilities advocate sums up the situation well, "The cost of doing business with a federal source of funding is that we must play the federal red tape game. And when we decide to put money into the hands of individuals for their own use, more providers must be found and processed. The task of making rules for all this to happen becomes mind-numbing for bureaucrats who know how difficult it is for people with developmental disabilities to be directly involved in the decision-making process in a meaningful way."

We could become paralyzed by the problems and barriers expressed here, but it is imperative that all of the energy available, including the energy expended in the current turf warfare, be harnessed and aimed at finding "pieces" of the answer. Rather than trying to "herd the cats," let us seek and find things one at a time that can be done to alleviate the inequities of voice and power at the table.

How about inviting more professional advocates representing more networks of people with disabilities to sit at the decision-making table?

How can we help make sure that issues are being framed more clearly from the perspective of people directly effected, and their views are being taken back to the decision-making table accurately?

How can we ensure that the staff who work directly with people know the options themselves and understand them?

How about finding ways we can more effectively bring more people with disabilities to the decision-making table? How can they be enabled to be effective and genuine "players" at the table?

Many more questions need asked, and answers brainstormed and attempted. The vision remains credible and worthy. The diverse cast of characters saddled with the task of making the vision a reality is credible. But it is time to give up on trying to herd the cats. It is time for the cats to learn to live together in ways that will benefit them all - especially to benefit those whose voices have been softest and whose power has been minimal.

Update: On September 8, JCARR allowed a package of nearly 50 rules to become effective despite opposition to the package from the provider network, and despite opposition to two rules by the County Boards. Legislators clearly heard the voices of families and advocates in support of the rule, including the Arc of Ohio, the DD Council, Ohio Legal Rights Service, the Cerebral Palsy Association of Ohio, and Advocacy and Protective Services, Inc. Another hearing of JCARR will take place on September 29 when three remaining, but very controversial rules, will be heard, including rules on the local Medicaid authority and contracting.

Triple Jeopardy: African American Women with Disabilities

Report Now Available

For African American women with disabilities, the double jeopardy of being a minority and having a disability becomes "triple jeopardy" with the added element of gender.

DD Council, in collaboration with the Ohio Urban League, Ohio Legal Rights Service, and the Ohio Department of Health hosted three focus groups dealing with the issue of triple jeopardy. The groups gave a voice to African American women with developmental disabilities between the ages of 16-60.

This project worked to:

Stimulate public awareness of the issues surrounding women caught in triple jeopardy.
Identify gaps and barriers that exist for the women in this category.
Provide recommendations on how best to meet the formal and informal community support needs of women in triple jeopardy.

The final report presents results of the focus groups, as well as the stories of the women participating, and gives an understanding of what developmental disabilities are.

To receive a copy, contact Ken Latham, ODDC, (800) 766-7426 v, (614) 644-5546 v, (614) 644-5530 tty, or e-mail kenneth.latham@dmr.state.oh.us.

Ohio DEAFair 2003

Saturday, November 8
10 am-5 pm
Lausche Building at the Ohio State Fairgrounds, Columbus

Program includes:
* Speaker * Entertainment * Youth activities * Exhibits * Door prizes

The Ohio DEAFair will increase awareness and educate people who are Deaf, hard of hearing, deaf/blind, children of hearing parents, senior citizens, service providers, and others about:
* Using interpreters * Availability of community services * Resource * Available technologies

Sponsored by: The Ohio Association for the Deaf

For admission fees, or other information, contact: Marsha Nippert, (614) 529-7068 tty, (614) 529-7078 fax amnippert@aol.com

"Lest We Forget" to document institutionalization experiences

The stories and experiences of Ohioans with disabilities who have endured institutionalization on a variety of levels from the 1960s to the current day are being sought and documented for a multi-media project called Lest We Forget.

The project will ultimately include oral histories through filmed documentation, a CD, DVD, and book, said Judy Leasure, who is coordinating the effort through Dayton Partners for Community Living.

Funders for the project include the DD Council, the Ardmore Foundation of Akron, and the CREST Network.

"The DD Council was among the first to step forward and know the value of what we’re doing," Leasure said. Lest We Forget is patterned after similar projects that have recorded oral histories from Jewish survivors of World War II Nazi death camps.

Jeff Moyer, a well-known disabilities advocate and musician from Highland Heights is interviewing people with disabilities about their experiences.

Moyer said he’s lived much of what he’s hearing from the personal accounts, because his brother was institutionalized for nearly 30 years. "I well know the horror," he said. "This (project) has taken me deep into the belly of the beast."

"It’s important to affirm the experiences that people lived," Moyer said. "It’s important to disability history, and we owe it to the people whose lives were stolen. We also need to put up a firewall so we never go back there."

Some of the stirring first-person accounts cite lock-downs, rape, punishment through strappings to benches, and dungeon-like solitary confinement in small, dark, concrete rooms.

"When we leave interviews at the end of a day, it’s probably one of the most draining and rewarding things. It’s touched all of us in one way or another," Leasure said.

"Part of the story is going to be that all institutions should be closed," Moyer said.

Nearly 11,000 individuals with disabilities were institutionalized in the 1960s. Today, that number is about 1,800, Moyer added.

Nancy Holderfield, community relations coordinator at Ardmore, Inc., Akron, where several interview have taken place, said local artist P. R. Miller will create a Lest We Forget memorial gazebo and park near Ardmore.

"As time goes on and new people are coming into the field, there is just a great fear that we will return to the horror of putting people in institutions," Holderfield said. "We want to remember their stories so that families and communities will always stand as an advocate for those vulnerable people."

The CD project that will include Moyer’s music and poetry, should be completed by October of this year.

For more information, or to inform producers of stories and participants, call Judy Leasure, (937) 898-3655, or write, Partners for Community Living, 1651 Needmore Rd., Dayton, OH 45414. Jeff Moyer can be contacted at www.jeffmoyer.com

"Art on Main" creates quality art, builds self-confidence

The award-winning art created in the 1990s by two men with disabilities who worked at Lawnview Industries in Urbana was the spark of an idea that has become Art on Main, a gallery and framing shop that opened August 22, 2003.

While Bob Fricke and Ed Durham are no longer living, their creativity inspired officials at the Champaign County Board of Mental Retardation and Developmental Disabilities (CCBMRDD) to create an outlet for others with disabilities at Lawnview to tap into their creative sides - producing professional, original artwork that is framed and matted, and also printed as cards.

Art on Main also provides employment opportunities to some people from Lawnview who work in the gallery stocking inventory. Eventually, gallery manager Gary Haber said he would like to have more Lawnview artists employed at the store in a variety of framing and other capacities.

The arts project is a division of the CCBMRDD Adult Services Program, said Jamie Porter, Director of Personal and Career Development. Seventy people with disabilities work at Lawnview, and 13 are artists in the program.

"I wanted to figure out how to combine arts with disabilities," she said. "I wanted to give art a legitimacy."

One aspect of that is the growth she has seen within the artists themselves. "Their art is pure. It comes from the gut," she said. At first, participants thought of themselves as being in an art class. But with sales of their art, that has changed. "Now they say, ‘I am an artist.’"

"Gary (Haber) took it to the next level to get more income for the artists and the program," Porter said. "Our goal is to make it the artists’ program, and Gary would be the adviser to them."

Art on Main is housed in a 1,500 square foot gallery, with an equal amount of storage, educational and framing space in the rear of the building. About 40 pieces of art adorn the walls. Pieces are created using a variety of elements including oil, acrylic, water color and mixed mediums.

Haber’s background includes years as the Bellefontaine, Ohio Arts Commission director, as well as many years promoting the work of worldwide artists and owning other gallery and framing shops.

He’s very impressed with the art he’s seen produced by the artists of Lawnview. "I don’t see a disability," he said. "I see artists as artists. I see the joy in an artist’s face when someone appreciates their work."

Sisters Jill and Kim Wolfe of St. Paris are both artists who create pieces at Lawnview. "I just enjoy it," said Jill, who at 41 paints and draws lighthouses, dolphins, winter scenes, and religious scenes. Kim, 43, specializes in architectural-based art. "I like to do buildings," she said. The award-winning continues, as Jill received First Place and a Best of Show in the Professional Division at the Champaign County Fair in August for, "Lighthouse with Dolphins." Other artists from Lawnview received first and third place awards as well.

While a majority of the art in Art on Main is from the Lawnview artists, Haber said local artists without disabilities also have placed pieces in the gallery. Those items include paintings, blown glass, and ceramics from other galleries.

"A gallery of this nature gives a large, diverse audience the opportunity to enjoy and appreciate artists who previously had no venue for their artwork," he said. And, he’s seeking even more art, opening the doors of Art on Main to artists with disabilities from throughout the state. As more galleries open in the area, Haber envisions more arts exchanges between the businesses to promote one another. Prices for the art range from $75 to about $500. Artists receive a percentage of the sales of their artwork.

As time goes by, Art on Main will also feature art classes and workshops for the public, Haber said.

For more information, visit www.artonmaingallery.com, or contact Art on Main, (937) 652-1657 v; (937) 653-6350 fax; e-mail artonmain@ctcn.net

Art on Main is located at 125 N. Main St., Urbana, OH 43078. Gallery hours are Tues.-Thurs., 10 am-5 pm; Fri., 10 am-6 pm; and Sat., 10 am-4 pm. Closed Sun. and Mon.

DD Council announces "Funding for the Arts" awards

Funding for the Arts is a new program offered by DD Council to help emerging artists with disabilities develop the skills necessary to begin marketing their art for profit. The recipients of the awards will assist artists with disabilities in a variety of artistic disciplines.

Awards will be presented to the following organizations for 2004:

Art on Wheels, Cleveland
Rendville Art Works, Residential Inc., New Lexington
Gallery Arts Center, Columbus
United Cerebral Palsy of Central Ohio, Columbus
The Work Resource Center: Smart Lab, Cincinnati

For more information about these projects, contact: Leslie Paull, ODDC, (614) 466-5205, (800) 766-7426, (614) 644-5530 tty, leslie.paull@dmr.state.oh.us

Columbus Children’s Hospital announces Autism conference

Friday, October 20, 2003
Fawcett Center, Columbus

Dr. Jacqueline Wynn will host "Practical Classroom Teaching Strategies for Children with Autism", a one-day conference for educators, inclusion teachers, classroom aides, speech-language pathologists, OTs, PTs, APEs, psychologists and parents.

For more information, contact: Conference Coordinator, (614) 722-4939, (614) 722-3864 fax.

DD Council seeks proposals for new projects in 2004

The Ohio Developmental Disabilities Council is announcing the projected availability of $225,000 in grant funds for 2004.

These funds, allotted to Ohio under Public Law 106-402,will be awarded competitively in accordance with the 2004 State Plan for Developmental Disabilities.

Each applicant is required to provide "matching" funds to the financial award.

Many of Council’s current projects will continue through 2004. Council is requesting proposals for the following new projects:

Disability Awareness Across the Medical Continuum: Needs Assessment ($25,000)

Wide-ranging barriers within medical systems (hospitals, providers, insurance) undermine health care access and quality for people with disabilities. Examples include inaccessible medical facilities and equipment, inappropriate provider attitudes, and narrow coverages.

This project will analyze and prioritize significant barriers, then recommend strategies for addressing them in subsequent projects.

The grantee must demonstrate research expertise, incorporate leadership of people with disabilities, work closely with ODDC’s Health Committee, and use existing information on barriers and remedies. Strategies must be prioritized by June, 2004.

-Richard Skelley, Ph.D., Program Staff

Autism Spectrum Disorder (ASD) Service Guidelines ($50,000)

The Autism Task Force developed guidelines to serve as a tool for providers and families in making informed decisions about children and young adults with ASD.

This project will provide the expertise to oversee and collaborate in the printing of the guidelines document; market and distribute the document; develop a plan for marketing the document to post-secondary education institutions; educate public policymakers at all levels as to the needs, supports and appropriate services outlined in the document.

Note: Cost of printing is being donated.

-Kay Treanor, Program Staff

Infant and Toddler Mental Health ($50,000)

The purpose of this grant is to ensure children with mental health issues will have earlier identification, referral and treatment.

Project will evaluate mental health assessment tools for children, age birth to five, at risk for developmental disabilities or who have developmental disabilities, as to their overall effectiveness and promote their use by professionals through education, training, and technical assistance. Council wishes to collaborate with efforts in this area already under way.

-Kay Treanor, Program Staff

Educational Options for Children ($50,000)

It is the intent of Council to fund a project that will maximize the educational potential of children with disabilities by assisting parents in understanding the educational options and rights available to them at the pre-school level.

The project will demonstrate and evaluate a community education program focused on preschool in at least one district in Ohio and establish an informed advocacy base that will effect positive systems change in the education system in that district.

-Kay Treanor, Program Staff

Professional and Teacher Development Task Force ($50,000)

The project will fund a grantee to staff a Task Force. Members will be a statewide representation of educational stakeholders and members of ODDC. Task Force will address the educational needs of students with disabilities in Ohio’s implementation of "No Child Left Behind Act" and the reauthorization of IDEA.

Outcomes will include insuring there is language in the State’s Consolidated Application Plan and in its guidance to the Local Education Agencies to meet the educational needs of students with disabilities. Additionally the Task Force will educate public policymakers at all levels as to the need for better-prepared professionals and teachers to educate students with disabilities in all educational settings.

-Kay Treanor, Program Staff

Application deadline is 10/15/03.

To request an application, contact:

Alea Jones
ODDC Grants Administrator
8 East Long Street, 12th Fl.
Columbus, OH 43215
Toll Free (800) 766-7426 v
(614) 466-5205 voice
(614) 664-5530 tty
(614) 466-0298 fax
alea.jones@dmr.state.oh.us

Interested parties are encouraged to consult with the appropriate DD Council Program Staff prior to requesting applications. Call or fax the numbers listed above.

Vision: People with brain injury served by MRDD system

-by Dave Zwyer, Director, Ohio DD Council

What can we, as a system of supports that has a stated commitment to providing needed services for people with disabilities, do to meet the needs of people in Ohio who have acquired a traumatic brain injury?

Part of the Mission of the Ohio DD Council is to "create visions" to improve the lives of people with disabilities, especially developmental disabilities. This article is about such a "vision," a vision that is my own and has not been officially adopted by Council at this time. Simply put, my vision is this: to change current eligibility criteria for services from the MRDD system in Ohio to allow it to serve people with brain injury, whether or not their injury occurred after age 22.

There are several reasons why it is time for this vision to become reality, but the most important reason is the sheer number of people involved. Traumatic brain injury is the leading cause of death and injury-related disability among children and young adults in the country. At least 5.3 million Americans-a little more than 2% of the U.S. population-currently live with long-term disabilities resulting from traumatic brain injury.

By way of comparison, it is estimated that five million Americans have a persistent mental illness and 7.3 million Americans have mental retardation. More people acquire a traumatic brain injury each year than the numbers who are diagnosed with multiple sclerosis, spinal cord injuries, HIV/AIDS and breast cancer combined. In Ohio alone, it is estimated that over 205,000 people are living with a traumatic brain injury, and that number is increasing by more than 2,500 people a year.

What is perhaps most amazing about people with traumatic brain injuries in Ohio is that despite their large numbers there are very few services available for this population outside of a short-term rehabilitation program. This is the largest single disability-related population to fall through the cracks of the service delivery system in Ohio.

The only other program available for people with a traumatic brain injury is a Community Support Network that the Brain Injury Association of Ohio has been put together with the assistance of the Rehabilitation Services Commission’s Brain Injury Advisory Committee. The network provides information, resource identification, education and advocacy through regional field offices.

The MRDD system does offer services to people who experience a traumatic brain injury-if that injury occurs before age 22. Because many traumatic brain injuries occur to children and individuals under 22, the MRDD system already is serving many people with brain injuries.

It is an artificial distinction, at best, to say of two people whose functional challenges are comparable and who otherwise meet the definition of developmental disability, that one is eligible for MRDD services and the other is not when their only difference is the age when the injury occurred. If someone functions as if they have a mental disability, they should be eligible for similar services despite the age of onset.

Of course the logical challenge to this proposal is that the MRDD system already has a waiting list for services, and that we can’t afford to take existing resources and spread them to serve even more people. Possible responses to that argument include:

We can’t afford to ignore such a large segment of our population any longer-not unless we want to make a determination that people with a traumatic brain injury are somehow less deserving than people with other disabilities.
It does not make sense to create an expensive new system just for people with traumatic brain injuries when the MRDD system already provides all of the essential services through a statewide network of County Boards of MRDD.
In my opinion, County Boards of MR/DD should be reaching out to serve people with the most significant mental disabilities, other than mental illness, in their communities regardless of the cause of the disability and the age of onset.
The MRDD system is already serving people with traumatic brain injuries when the injury occurred before age 22. In other words, the MR/DD system already has a head start in serving this population, although it could improve those services.
It does not make sense to pursue the alternative of creating yet another Medicaid waiver where the state will have to come up with additional matching funds. It is the availability of local match that makes the MR/DD waivers work.

Consider the case of an 8-year-old, Lee*, who was struck by a car in 1975 and suffered a closed head injury. As a result of the injury, Steve has been diagnosed with intermittent explosive disorder and profound mental retardation. Steve recognizes colors, recognizes people by name, can count to ten, and can provide much of his own personal hygiene.

Since the accident, Lee’s parents have struggled to provide him with basic needs that most of us take for granted. He has lived in several nursing homes, several ICF/MRs, several rehabilitation hospitals, and two foster homes. At one of the nursing homes with a specialized program for people with traumatic brain injury, Lee made remarkable progress due to a consistent program structure and intensive one-on-one attention. But under current Medicaid regulations his stay there was limited to 90 days because the facility is allowed only to receive payment for short-term treatment. Recently, Lee finally was given an IO waiver slot that appears to hold promise.

Throughout all this bouncing around, the County Board of MRDD where Lee and his parents resided when the injury occurred (and where the parents still live) failed to accept any responsibility for serving Lee itself or assisting him to find services elsewhere. Nursing homes either could not provide Steve with the intensive intervention he needed or could only provide services for a short-term duration.

Lee regressed in Developmental Centers and other ICF/MRs because they did not have behavior programs that met his needs. One foster home placement was terminated after an incident of abuse, but another served Lee for almost ten years.

For every Lee we have who is eligible for MRDD services, we have at least one person who is not eligible because his traumatic brain injury occurred after the age of 22. The distinction does not make sense. We should first allow in statute and then later mandate that the MRDD system in Ohio serve all people, of whatever age of onset, who meet the functional standard under the developmental disability definition.

We need to find a way to distribute our resources more equally to include a very significant segment of Ohio’s disability population. And we need to train County Boards how to tailor their services to better respond to people with significant needs as a result of a traumatic brain injury who live in their communities.

If there are other realistic alternatives to providing services to this population, someone needs to put them forward. We cannot justify continuing doing nothing any longer.

*Lee is the son of DD Council Member Lyla Kepler of Canton, OH.

State parks offer accessibility features to enhance the camping experience

People with disabilities can get back to nature with a bit more ease this year at some of Ohio’s state parks thanks to new, and soon to be added accessibility features.

Jean Backs, public information manager for the Division of Parks and Recreation, said park management regularly tries to improve facilities to appeal to the broadest audience possible. "Parks are always making incremental improvements and accessibility is a top consideration," she said.

At Buck Creek State Park in Springfield, a new, fully-equipped and accessible cottage made its debut with this camping season, said Virgil Goodwine, park manager.

"Having facilities like this enables people to get out and enjoy the environment," he added. The improvements include a raised picnic table, and an accessible fishing pier, plus raised fire rings for campfire fun.

Phil Vichosky, park manager at Pymatuning State Park in northeast Ohio, said modified restrooms and raised metal fire pits help guests enjoy their stay. "You can go directly from your camping pad to the fire ring apparatus (if you use a wheelchair)," he said.

Grilling is also easier for those with disabilities, because the grills are elevated to accommodate people who use wheelchairs.

Through a watercraft grant, Pymatuning was able to create an accessible dock for boat launches, Vichosky said. "Accessibility is important because in an environment like our parks, terrain can be rough. If we can provide accessibility, it brings the experience to them, and campers can go directly to the experience without relying on others," he said.

Within the past two years, Maumee Bay State Park Resort and Conference Complex built four brand new cottages, two of which are accessible to people with disabilities, said Lodge Manager Patrick Czarny. He said Maumee State Park, constructed in 1991 and the newest of the state’s 15 parks that have cottages, said that it has eliminated various elevated areas within its lounge and snack bar area. The front desk/registration area now also has a lowered counter space for easier customer service for people with disabilities.

The pool at Maumee already has a slide-down ramp to assist swimmers who use wheelchairs, but visitors can look forward to a hydraulic lift in early 2004, which will lift swimmers with disabilities into and out of the water. "We do most of our upgrades in the winter because that’s our slow time," Czarny said.

Backs said there also have been accessibility improvements made to the swimming pool at Salt Fork State Park, outside of Cambridge.

For more information about Ohio’s state parks, visit www.ohiostateparks.org

Editor’s note: Neither Ohio DD Council or AXIS endorse the complete accessibility of the State Parks included in this article. However, some of the features described appear encouraging. As readers visit the parks, we’d like to hear how accessible you feel they are.

AT Ohio provides computer technology to Ohioans with disabilities

People with disabilities who need computers but can’t afford them can leap into the computer age with Assistive Technology of Ohio, (AT Ohio) and its Computer Refurbish and Recycle Program.

Bill Darling, Ph.D., AT Ohio associate director, said the agency began in 1992 as Ohio T.R.A.I.N. The computer-recycling program has existed for three years but recently has grown in popularity. "We promote technology for people with disabilities," he said.

"We upgrade computers, to make them competitive for use by people with disabilities, or families with children with disabilities," Darling said.

To apply for the program, a person must be an Ohioan, have a disability, and have a need for a computer, "We look at the computer as an essential piece of assistive technology. People with disabilities are a group of people who can benefit the most from assistive technology. We think this (program) can give them a start. It’s one of the things we do that we are most proud of," he added.

Applicants must pay $25 for their computer, to cover shipping costs.

Recently, the Ohio Rehabilitation Services Commission upgraded its own technology, and donated 680 laptop and desktop computers to AT Ohio for distribution to applicants.

The program has always had a waiting list, Darling said, but this is the first time that more computers have become available than the size of the waiting list. Knight said He projected that the program will serve between 800 and 1,000 this year, not only with computers but with software and additional items such as trackballs that allow for easier hand control.

Rob Knight, Southeast Regional Director for the program, encourages corporations that are upgrading computer systems to donate the used computers (desktops or laptops) to AT Ohio. He said he continually tries to express to corporations, "the difference a computer makes in the lives of people with disabilities."

One person who directly knows the value of being technologically linked is Holly DeWitt, 31, of Toledo.

DeWitt, who has a brittle bone condition with arthritis in her joints, received her computer from AT Ohio in April. Using a Dell laptop computer is easier and less painful than trying to write things out by hand, she said.

"I have used it for working on my resume when I was job hunting, and it helps keep me organized," DeWitt said.

The portability of a laptop is important to her. "It gives me more flexibility to be able to have it where I am rather than being stuck in one spot." She has also used the computer to maintain information about her child’s medical condition and can take it with her to medical appointments. She learned about the program through the Ability Center of Greater Toledo.

Knight, who is also chair of the Ohio Governor’s Council on People with Disabilities, as well as state director for Enable America, said computers in the hands of people with disabilities also allows them to communicate with people throughout the world; join list serves that provide constant streams of information; join online support groups pertinent to their disabilities; do online banking; or take part in online education opportunities, as well as online purchasing. "It really opens up a lot of doors," he said. "And most importantly, (the computer use) could lead to possible employment."

The program only accepts Pentium-level computer donations, so that they are upgradeable units, Knight said. The computers are then refurbished with an Operating System similar to Windows, which includes the Open Office word processing program, (which is compatible with Microsoft Word) and Office Suite, PowerPoint, and spreadsheet capabilities. A computer disk is also provided for a discount e-mail service, as well.

For more information about AT Ohio and its programs, visit www.atohio.org; or call toll-free (800) 784-3425 v; (614) 292-3162 tty; (614) 292-5866 fax

Call Knight directly at (740) 568-0527.

AT Ohio is located at 2050 Kenny Rd., 9th Floor, Columbus, OH 43221.

TOPS Program to educate people with disabilities in computer use

This October, AT Ohio will begin the Technology Outreach Program for assisted Self-help (TOPS), a computer technology education program for people with disabilities living in Washington, Morgan and Monroe counties. The 40-hours of coursework will educate 50 people within the next year to use computers. The program is funded through a grant from the Appalachian Regional Commission.

"To promote employment," said Rob Knight, the SE Regional director of AT Ohio’s Computer Refurbish and Exchange Program, "we’re trying to bring technology down here to families."

Agencies with prospective students for the class are asked to contact AT Ohio now, Knight said. Initially, five individuals will be selected for the class from each county. There is no cost to participate in the program.

As part of the class, the participants will receive $1,500 worth of new computer equipment. Upon completing the class, a skills and career assessment will be conducted to further guide with future goals.

For instance, one woman who has a brain injury, wants to learn basic skills for web design and create her own website design business, Knight said.

Classes will take place at Washington State Community College in Marietta (Washington County), where six to eight stations have been adapted with the latest in computer and assistive technology. Participants must be high school graduates, as least 18 years of age. There will be two instructors per class, and students will be certified in Microsoft equipment use.

The class is intended to help individuals with disabilities make contacts to obtain employment, or help direct them to further education. AT Ohio hopes to expand the TOPS program to the Columbus area with a partnership with the Ohio State University.

For more information, contact AT Ohio, (800) 784-3425 (toll free in Ohio), or Rob Knight, (740) 568-0527 v

Ohio advocate stresses importance of proper diagnosis of MCS

Lurking in those products that seem to make our lives so much easier and that save us precious time are poisons that often lead to disabling conditions, or even death. And Toni Temple ought to know, having battled a disinterested public and the skeptical medical establishment for many years.

As founder of the Ohio Network for the Chemically Injured (ONFCI) in the early 90s, she and her organization initiated HB389 (Rep. Pringle) in the 93-94 session to educate physicians to better diagnose toxic poisoning. The broader description of this condition is Multiple Chemical Sensitivity (MCS).

Since World War II, says Temple, the massive growth of chemical production in so many areas of our daily lives combined with our natural genetic immune points of weakness cause many to experience a wide variety of disabling and life-threatening conditions. Included in the long list of diseases that can result from MCS are several forms of anemia, Attention Deficit Disorder, Depression, Diabetes, Chronic Fatigue Syndrome, Alzheimer’s Disease, Peripheral Neuropathy, Allergies, Asthma, Lupus, Fibromyalgia, and Parkinsons Disease.

Frustrating MCS advocates are the number of physicians who simply have not made themselves aware of current toxicological literature, and are then unable to ask the right questions to uncover a toxicological diagnosis when patients present their symptoms. Temple and others who live with chemical sensitivities every moment are determined to attack the lack of awareness at all levels because they know the dangers firsthand.

Temple attributes a toxicological profile on zinc, by the Agency for Toxic Substances (ATSDR) of the Center for Disease Control, for saving her life.

The booklet "Taking an Environmental History" is available from ATSDR. Temple advises anyone with unexplained pain, fatigue or bouts of illness who is not being diagnosed properly to request the booklet and begin to search for what might be ailing him or her.

Since doctors often are reluctant to diagnosis MCS because of the medical community’s reluctance to perceive MCS as "scientific enough," it is important that patients take responsibility for their own health and encourage their doctors to take continuing education courses in toxicological and environmental illness, and to use the Internet to learn more about chemical sensitivities. Too often, doctors are prone to explain away symptoms, rather than associate the symptoms as directly connected to chemical toxicity.

Through ONFCI efforts, Southwest General Hospital in Cleveland has adopted full MCS policies and procedures to ensure chemical free environments for patients and provide doctors and nurses pertinent information. In addition, the National Environmental Education and Training Foundation (NEETF) has in place a ten-year Physician Education Program.

Temple is most concerned that everyone ought to take MSC seriously, because we all are exposed continually to toxins in products and in the environment. "If you are diagnosed with cancer, it may have been from chemical exposure ten years earlier," she explains. "Genetic make-up determines where we have weak spots in our immune systems. Long-term exposure to perfumes, latex, disinfectants or many other chemicals often lead to disabling and life-threatening conditions."

She explains that one person’s immune system will cause them to react immediately to a pesticide truck spraying in their area, while someone else in the same room has no reaction until ten years later. The point, says Temple, is for all of us to avoid exposure to such toxins whenever we have the choice to do so, regardless of what others may think of such proactive behavior.

The U.S. Access Board in Federal Register has recognized MCS as a disabling condition, but Temple voiced concern that "most in the disability and medical community do not." She believes access issues for people with chemical sensitivities are as important as they are for people with traditionally recognized disabilities. The Access Board has contracted with the National Institute of Building Scientists to create guidelines to make buildings safer for people with MCS. Poor indoor air quality, mold, perfumes, carpet, and cleaning products are just a few of the barriers confronting people with MCS every-where they go.

Another area of concern to ONFCI is the problem of drug reactions and interactions. In 1998, the American Medical Association listed the fourth leading cause of death to be acute drug reaction.1 For example, Temple says, a person can have exposure to a chemical that causes depression, and so is prescribed an antidepressant, which can cause Parkinsons Disease and asthma and further depression. She recommends that we read the more complicated drug information insert that comes with prescriptions, not just the abbreviated one the pharmacist gives you.

So what does all this mean for those of us who have given MCS little, if any thought up to now? Temple sincerely hopes that when you experience symptoms that are not being explained sufficiently, you take several steps:

Keep a diary or journal to attempt to identify a pattern of your symptoms: where and when they occur, and the activities and products with which they may be associated.
Educate yourself: learn the symptoms associated with MCS and read all you can find about their causes. A good search engine will produce credible material on MCS.
Ask your doctors to take a continuing education course in toxicology and environmentally related health problems and refer them to helpful web sites.
Do not take a doctor’s initial diagnosis as "law"! You have a right to question. The Institute of Medicine of the National Academies in 1999 reported that the eighth leading cause of death was medical error.2 You know your body and know when something is not right and needs further investigation.

For more information, contact:
The Agency for Toxic Substances and Disease Registry of the Center for Disease Control, www.atsdr.cdc.gov, 1-888-422-8737

National Environmental Education and Training Foundation, www.neetf.org, (202) 833-2933

Ohio Network For the Chemically Injured (ONCFI), PO Box 29290, Parma, OH 44129, (440) 845-1888,
http://www.ncchem.com/ONFCI/

1 Journal of American Medical Assoc., 1998 279(15): 1200-1205
2 Institute of Medicine of the National Academies, Nov. 29, 1999

News from Ohio Legal Rights Service (OLRS)

Ohio Legal Rights Service
8 E. Long St., Suite 500
Columbus, OH 43215-2999

Toll-free: 1-800-282-9181
Local: 1-614-466-7264
TTY toll-free: 1-800-858-3542
TTY local: 1-614-728-2553
Fax: 1-614-644-1888

www.state.oh.us/olrs

www.state.oh.us/olrs/fsc>

"A Closer Look: How They Did It!"

An OLRS publication, A Closer Look: How They Did It, highlights struggles and successes of six children’s residential treatment facilities in Ohio that are trying to reduce or eliminate use of seclusion and restraints.

Use of seclusion and restraint is common in community and residential mental health treatment facilities. One of the most notable investigative reports on the subject (Hartford Courant, Oct. 1998) revealed that thousands of children and adults were injured and many died during inappropriate use of physical restraints in psychiatric treatment facilities in the U.S. Ohio’s statistics on injury and deaths during restraints paralleled the startling nationwide statistics.

Ohio Legal Rights Service (OLRS) is the federally mandated agency authorized to protect and advocate the human, civil, and legal rights of people with disabilities. Through state statute, OLRS receives notifications of Major Unusual Incidents (MUIs) from the Ohio Department of Mental Health. MUIs are incidents in treatment facilities such as allegations of abuse and neglect, deaths, injuries, and use of seclusion and restraints.

To fulfill the federal protection and advocacy mandate, OLRS created an MUI computer database, and it can track seclusion and restraint trends and patterns from statewide and individual facility perspectives. The data show that some of Ohio’s children’s residential treatment facilities are reducing use of seclusion and restraints.

OLRS staff visited the six facilities in the Closer Look publication to see how they created and maintained cultures that emphasized minimizing or prohibiting use of seclusion and restraints.

Ten prominent themes or common experiences emerged from the review:

Have active administrative support
Train more
Develop a planning team
Use the benefits of data collection and analysis
There will be both positive and negative outcomes
Expect barriers
Include children and families
Study alternative programming
Expect increased costs
Professionalize the role of direct care workers

These ten common experiences were consistent across the facilities and were similar to current literature on systems change. OLRS encourages all facilities to consider this Closer Look document as preliminary research in their efforts to reduce or eliminate the use of seclusion and restraints. Facility administrators will most certainly encounter their own unique challenges in their attempt to change the system but these 10 common experiences can serve as the framework for change.

System change is not easy, but none of the administrators interviewed said they regretted their decision to change. Rather their feeling can be summarized in the following statement: System change was time consuming, difficult, and threatening all this and in the end, well worth it.

OLRS’ Closer Look series is based on their MUI database. Publications include reviews on Psychotropic Medication Practices, Families and Our Kids Living in the Residential Maze, Security Oversight, and Selected Resources.

Copies of these and other OLRS publications can be accessed through the web site, www.state.oh.us/olrs or by calling (800) 282-9181, ext. 7.

Family Support Act reintroduced as House Bill 214

On June 6, 2003, State Representative Sally Conway Kilbane reintroduced the Family Support Act, House Bill 214 (formerly House Bill 537).

The Family Support Act was created and written by advocates of the Family Support Collaborative (FSC). The primary purpose of H.B. 214 is to change the system of family support to one that is family-centered and family-driven.

The Family Support Act would establish a statewide Family Support Board made up of family members who have children with disabilities. The board would be charged with, but not limited to, the following responsibilities:

Establish a simple, streamlined application and eligibility process
Create a single point of entry to find out about, apply for, and evaluate services
Establish evaluation mechanisms for a family support system
Measure family-centered and family-directed outcomes
Test and pilot initiatives
Coordinate working relationships or establish interagency agreements with public and private entities
Make recommendations to the Governor and the Ohio General Assembly.

The bill has nine co-sponsors and was referred to the Ohio House Human Services and Aging Committee. The FSC expects legislative hearings to take place when the General Assembly returns from summer recess. Families and individuals who would like to express their views on this bill are encouraged to contact members of the General Assembly, particularly members of the House Human Services and Aging Committee.

For more information, read the bill on the web site of the 125th Ohio General Assembly, www.legislature.state.oh.us

Read more about the history of the bill on the FSC web site, http://www.state.oh.us/olrs/fsc/asp/FamilySupportAct.asp

OLRS Performance Audit: Opportunity for change and growth

Since 1975, OLRS has provided protection and advocacy services on behalf of Ohioans with disabilities. Last December OLRS had the opportunity and means to reflect on its achievements and to consider its aspirations for the next quarter century.

The Ohio Legal Rights Service Commission asked then-Auditor of State Jim Petro, to conduct a performance audit of OLRS’ administration and operation, mission and planning, client services, and its working relationship with the commission. The detailed audit report, with 61 recommendations among those four areas, touched every aspect of OLRS’ working life. The report has prompted rigorous self-evaluation within the agency, toward the ultimate goal of better serving Ohioans with disabilities.

As Commission Chair William Crum said in the Auditor’s December 19, 2002, press release, "This process has been very helpful in identifying ways to operate at the highest level of efficiency."

Executive director Carolyn S. Knight and her administrative staff have worked closely with commissioners to identify and act on those recommendations that promote the agency mission to protect and advocate, in partnership with people with disabilities, their human, civil and legal rights. Indeed, OLRS’ revised and refined mission and vision statements are among OLRS’ first responses to the audit recommendations.

Fruitful collaboration during recent months between OLRS and the commission is itself a response-in-progress to the audit report’s central recommendation "to encourage OLRSC’s participation in furthering the mission of the agency." OLRS recognizes the commission as its multi-member governing body. Knight and commissioners have forged a productive working relationship, a relationship that will promote agency accountability while safeguarding political independence. Political independence is essential if OLRS is to remain a viable and effective advocacy organization, and to retain the confidence of its clients.

In order to track and show progress since the December 2002 audit, Commissioners have developed, and OLRS is applying, a model to analyze and group audit recommendations and the corrective measures implemented. Five categories (client services, human resources, agency management, budgeting and strategic planning, and Commission) are filling fast with successfully completed projects designed to respond to selected recommendations and to improve the agency overall. OLRS and the commission have covered much ground together since December. Through their collaboration and hard work, they have addressed many of the audit recommendations.

A sample of the activities dealing with improved client access to OLRS services can be found elsewhere in this newsletter.

Setting Priorities: OLRS wants you

Ohio Legal Rights Service is drafting its 2004 working priorities right now. We need to hear the opinions of people with disabilities, their family members, advocates and other concerned parties. Tell us what our priorities should be (by mail, e-mail, fax, telephone, and even by Internet). Call today to receive a questionnaire by mail, or visit our web site to answer electronically: https://ospe.olrs.state.oh.us/OLRSgoals.html

About OLRS Priorities
Most of OLRS’ resources are used for basic protection and advocacy services each year. This "bread and butter" casework includes investigating abuse and neglect reports, monitoring state-operated facilities, and advocating for people who are denied reasonable accommodations or assistive technology for their disability.

In addition, each year OLRS defines working priorities-special projects or work with specified populations. OLRS does this priority work in addition to the agency’s routine protection and advocacy services.

Like other agencies, OLRS has a planning cycle. During summer, OLRS reviews its priorities and its casework of the current year, in order to determine the success of its priority work and to identify other significant issues that arose during the year. As part of its priority drafting process, OLRS asks for input from people with disabilities, their families, advocates and other concerned parties.

What to expect at an OLRS Public Hearing
Federal agencies that fund Protection and Advocacy systems like OLRS require that state programs obtain ideas from people who have opinions about our advocacy work and consider these ideas when establishing priorities. One way that OLRS hears from constituents is by holding an annual public hearing about proposed agency priorities.

OLRS wants people to be comfortable at the hearing and appreciates the time people take to provide input.

The hearing is held in an accessible place. OLRS provides interpreter services and other accommodations upon prior request. OLRS pays a court reporter (a person not connected in any way to OLRS) to record what everyone says so that OLRS has a complete, accurate record of the hearing.

People who want to participate can speak their opinions, or read from a prepared text. Public hearings are a time to get input, not a time for discussion. People who come to speak will not be questioned about their opinions. In a similar way, OLRS staff at the hearing will not offer opinions or answer questions. If people have questions, they can contact the agency at any time.

Public Hearing
OLRS’ Public Hearing scheduled each fall is one mechanism for getting input. Ohio Legal Rights Service, the federally designated protection and advocacy agency in Ohio, will hold a public hearing on its annual goals and objectives for its federally mandated programs: Protection and Advocacy for persons with Developmental disabilities (PADD), Protection and Advocacy for Individuals with Mental Illness (PAIMI), and Protection and Advocacy for Individual Rights (PAIR).

The public hearing will take place October 28, 2003, at 1 pm until all testimony is heard. The hearing will be in the lobby hearing room of the Rhodes State Office Tower, 30 E. Broad Street, Columbus, OH.

OLRS will take written or verbal comments from any person on that day. Written comments also may be submitted by mail or fax to OLRS on or before November 7, 2003.

If you need interpreter services or other accommodations for the public hearing, contact Paula Smith, (800) 282-9181 or (614) 466-7264 by October 17, 2003.

Where to find OLRS’ priorities and questionnaire
OLRS has a brief Questionnaire that asks people to identify the most important issues that OLRS should pursue. You can order a questionnaire by mail, e-mail, fax, and telephone, or complete a questionnaire online on OLRS’ website.

You can read our working priorities on OLRS’ web site: http://www.state.oh.us/olrs2003/Goals.htm.

You can complete and send us a questionnaire electronically: https://ospe.olrs.state.oh.us/OLRSgoals.html.

You can write, e-mail, fax or call OLRS toll-free in Ohio to order printed copies of the priorities and the questionnaire at any of the contact numbers listed in the box on page 15.

OLRS improvements since the Performance Audit

OLRS has a new mission and vision statement to reflect the agency’s mission of self-advocacy, individual case advocacy and systems change work
OLRS has been able to increase case intake hours to 35 hours per week from 9 a.m. to 4 p.m., five days a week
OLRS has improved client access to intake by enabling callers to leave a recorded message or e-mail
OLRS now has the ability to receive all client voice-mail and e-mail on a 24-hour basis
OLRS now has the ability to return all intake calls and messages by the next business day!

Your window of opportunity is always open
The formal public comment period for OLRS’ draft priorities is open each year until the end of September. However, OLRS welcomes ideas and input at any time during the year. OLRS maintains an open and flexible process for establishing its agency priorities, because disability-related issues and challenges do not arise on schedule. OLRS can respond, plan, protect and advocate on behalf of people with disabilities better with continuous public input. Please contact OLRS to submit your comments.

Adaptive sports build skills and friendships

Lifetime recreational skills for people with all kinds of disabilities are promoted by Gary Bertelsen, and Sue Sutherland of The Adaptive Adventure Sports Coalition (TAASC).

TAASC, established in Columbus in 1997, serves people throughout the state but primarily in the central and north central Ohio region. The organization currently has plans to expand with sub-chapters in Dayton, and Cincinnati, said Sutherland, TAASC executive director.

Bertelsen is a member of the TAASC Board of Directors, and is also an activity instructor. "What we really do is help people build self-confidence," he said.

Sutherland emphasized that TAASC activities are purely recreational and non-competitive, and each skill is adaptable for those with disabilities. "Any skill that we do can be adapted," she said.

TAASC members of all ages take part in Alpine Skiing; Water Skiing; Cycling; Sailing; Canoeing/Kayaking; Ice Skating; Sled Hockey and Rock Climbing. The group recently had a fund raising activity at the Core-Com Ice Haus that is connected to Nationwide Arena in Columbus.

Sutherland said physical activity helps to lower death rates, the risk of heart disease and diabetes, as well as lower high blood pressure.

TAASC involvement also helps build friendships, promotes inclusion and enables participants to enjoy sports with friends and family, she added.

Bertelsen said, "You tell us what you want to do, and we help you, we give you the support to get there, if it takes two days or ten years."

"We determine participant goals, and determine ability, not disability," Sutherland said.

Next, the learning style of the participant is established. "We all have different learning styles," she said.

Trained volunteers and instructors help with logistics, enabling people with disabilities to use a wide variety of sports equipment.

Typically, trainers use a minimum amount of adaptive equipment for any given sport as each individual begins to learn. "Then we start to take those adaptations away as their skill increases," Sutherland added.

TAASC trainers will even teach a friend how to assist a participant, so everyone can enjoy the world of sports/adventure and recreation, Bertelsen said.

Family and individual TAASC memberships are available, and help to sustain the organization, which also receives funding for equipment and projects through a variety of sources. A person does not have to become a TAASC member to take part in its activities. Some activities include participation costs, and non-member costs are slightly higher than for members.

Making TAASC available to more Ohioans

To bring adaptive adventure sports activities to more Ohioans with disabilities, a TAASC sub-chapter has been established in Dayton. The main activity there will be kayaking, said Sutherland.

TAASC Board Member Carrie Melton has been directing program events from her home there, she said. So far, there have been five kayaking clinics, with an additional clinic dedicated to volunteer training.

Othotic/prosthetic company Orpro Laforsh, and retail store Whitewater Warehouse have been major supports for the Dayton TAASC sub-chapter, Melton said. The Miami County Board of MRDD has also brought new participants to the chapter activities.

Melton added that when people engage in adventure sports, learn new skills and challenge themselves, they also build their self esteem and confidence.

There is a growing interest in creating an adaptive cycling program in Dayton in 2004, she said. Currently, area residents can register for activities there by calling the Columbus TAASC office.

Sutherland said further sub-chapter expansion will include a group featuring skiing, kayaking and cycling on the area’s Rails to Trails network. A ski program collaboration is also being considered for the Cincinnati area in 2005.

"We’ve had tremendous growth and we’re hoping to take TAASC more to a statewide level now," Sutherland said.

Efforts are also being made to reach out to school systems in Columbus with adaptive physical education classes.

The TAASC office is located on the Ohio State University campus at 1139 Dodd Hall, 480 West 9th Ave., Columbus, Ohio 43210-1228.

For more information, call Sutherland at: 614/293-4963. Or visit, www.taasc.org for a full schedule of TAASC events.

CHOICES Project members face waves of barriers as they seek freedom and independence for others

The CHOICES Project, funded by the DD Council and administered by the ARC of Ohio, is a network of advocates that works to create community living opportunities for people with disabilities who either live in nursing homes or other restrictive institutional settings.

Experienced advocates have found the journey to independence for those they assist is often blocked by barriers such as the need for court appearances, a lack of housing, and the hidden agendas of various facilities. Yet, the work continues by the CHOICES teams.

Melinda Garverick, associate director of the ARC of Ohio, came to her position recently and quickly recognized key barriers to independence. "I get calls from seasoned team members with issues regarding individuals’ waivers," she said. "There seems to be a waiver ‘free-for-all’ without any anchor to it, and not all the information exchanged is accurate."

Lack of affordable housing is a major obstacle faced by our team members throughout the state, she said. "There is not enough affordable housing for people regardless of a disability," Garverick added.

Dan Loyer, the project’s nursing home team leader, said the housing/waiver connection is a major barrier to the CHOICES effort toward independence.

"If you get housing first, you can’t use the waiver," Loyer explained. Ideally, a waiver would be approved for community living; housing is then secured; a personal care assistant is hired, if needed; and doctors and medications are lined up for the individual.

He noted that waivers must be used within 30 days of obtaining them. Some extensions are granted, he added.

Coralee Bosworth, outreach specialist with the Linking Employment Abilities and Potential (LEAP) Center for Independent Living in Sandusky said housing authorities need to know they can obtain disability vouchers to obtain housing. Many times, the housing agencies are not aware of the vouchers.

Guardianships, through the mask of health and safety concerns, have been used by nursing home administrators as reasons to delay and deny independence to people with disabilities in Ohio.

"It seems like guardianships have always been there (as a barrier), but they’re being used more now," Loyer said.

Bosworth added, "Just because you have a disability, doesn’t mean you have to have a guardian." She went to court to advocate for a person with a disability on those grounds. "There were programs in the community that could keep him out of the nursing home," she said.

The barriers have become as educational to advocates as they are challenging, Loyer said. "I think it’s great for our team members to learn better advocacy, but I think that it’s wrong that we have to go to the extreme of having to go to court to help people out of nursing homes and to live independently," he added.

Many times, team members hear the nursing home mantra, "It’s our guideline, and it’s our regulation...."

"But every case is different," Bosworth said.

Bosworth advocated for the rights of a 34-year-old northern Ohio woman with muscular dystrophy who, upon leaving the hospital to return home, was instead to her shock taken to a nursing home.

Often, meetings at nursing homes involve a nurse practitioner, a case worker, a social worker, the director of nursing, the advocate, and the consumer, Bosworth said. "It’s the advocate’s job to let the nursing home officials know that the person with a disability is no different than anyone else," she said. "A lot of social workers do work with you."

Cindy Dorr, Independent Living advocate and Peer Support coordinator at MOBILE Independent Living in Columbus compared the perceptions held by the nursing home administrators to the degree of difficulty that exists when assisting a person in leaving the facility.

What keeps CHOICES team members working toward solutions and independence? "I always get the same answer from the advocates," Garverick said. " ‘I want people to have a better life.’"

For more information about CHOICES, visit www.thearcofohio.org or contact: Dan Loyer, nursing home team leader, (800) 303-3436 Access Code 11; loyerent@accnorwalk.com or AnnThomas, ICF/MR team leader, (740) 397-5235; annthomas@ecr.net

PCA from northern Ohio develops, strengthens advocacy skills through work

Personal care assistants (PCAs), through virtue of their jobs helping people with disabilities, are exposed to the issues and needs faced by the individuals who employ them.

While they work to assist others, sometimes the PCAs themselves are the ones who are helped into the world of advocacy and all that it involves, becoming strong advocates.

DD Council Member Myrna Torres, of Lorain, hired Susan Zamborowski, of Sheffield Lake, in 1999, the same year Torres was appointed to Council.

"It’s funny," Torres laughed. "When I interviewed Susan, she really didn’t want to work for me."

Zamborowski, who previously did PCA work for an agency, said friends urged her to meet with Torres. She also had experience caring for family members who had chronic conditions.

Torres, 46, has cerebral palsy and uses a wheelchair. Zamborowski chiefly helps Torres with cooking, cleaning, transportation, dressing and eating.

Her work with Torres has actually created and developed her own understanding and ability to advocate, Zamborowski said.

"She said I rub off on her," Torres said.

"Before working for Myrna, I didn’t realize that you could really advocate and express needs, and that changes could be made," she said.

In time, her assertiveness increased, Zamborowski said. A couple years ago, she urged Torres to meet with U.S. Rep. Sherrod Brown, her representative in Congress.

"You know how politicians are, so busy and all," she said. "We were at an event, and he was there, but he was leaving. I went over to him and grabbed his arm and brought him to meet Myrna."

The two then spoke to Brown about the importance of Medicaid Buy-In.

Zamborowski, 55, has advocated for Torres in obtaining two additional aides, a new computer, and a new walker, she said.

"I also have learned a lot of technical things from Myrna," she said. "I pay attention when I go to conferences with her. I am learning to do more things that I never would have done before." They recently attended a disabilities-related conference in Virginia.

Zamborowski proofreads reports that Torres writes for her DD Council activities, so she learns even more about advocacy issues, disability, and systems change.

Often, Zamborowski shares advocacy information with family and friends, helping to spread the word and further the causes important to people with disabilities. "If enough people talk about these issues, (officials) will listen," she said.

But she is quick to point out that Torres, herself, is a key inspiration. "She is an example to me."

Zamborowski said that other PCAs who want to strengthen their knowledge about advocacy and disability issues can do so by focusing on the aspect of advocacy that interests them the most.

"I read the publications about disabilities and advocacy that Myrna receives," she said. "I follow the daily news, too."

Zamborowski said another good and easy way for PCAs to become stronger advocates is to simply write a letter, either to a public official or to their local newspaper, about situations or needs they recognize that are not being met or that are being threatened with funding cuts. "Eventually, those PCAs can become more involved," she said.

Advocate and his assistants stressed need for community supports

Ohio advocates for disability awareness lost a good friend July 5 with the passing of 33-year-old Robert "Rob" McNamer, Hilliard. He had Duchenne muscular dystrophy since age four and died of heart failure.

McNamer for years advocated for himself and others with disabilities as he fought to gain his independence and leave a nursing home. He had been living independently for seven years at the time of his death. A 2000 graduate of The Ohio State University, he earned a bachelor’s degree in journalism and worked as an editor for a New York-based news clipping service.

To pursue his education he successfully argued that the Ohio Bureau of Vocational Rehabilitation, which had categorized him as unemployable, should cover his caregiver expenses while he was in college. He was in the process of entering graduate school when he died.

In one of his last advocacy appearances, he spoke to state legislators and advocates at a May 22 Advocates in Action (AIA)* event at the Hyatt Capital Square in Columbus. He talked about the need for continued state funding for home-based care programs that assist people with disabilities. He spoke about his experiences and accomplishments in life, and how those with disabilities need the community supports that allow them to choose where they want to live.

"From the moment I met Rob a few years ago, I was touched by his positive, optimistic and determined approach to life," said Jackie Martin, AIA project coordinator. "He was truly an inspiration to me and to other people that I witnessed him interact with."

In the weeks prior to his death, McNamer spoke with DD Quarterly staff about advocacy and caregivers. The interview was prompted by how one of his own nurses, Eric Trabold, spoke as strongly as McNamer about the need for community supports for Ohioans with disabilities.

In those interviews, McNamer said advocacy on the part of his caregivers came easily. "I educate my nurses as much as I can," he said. "My nurses are pretty involved with advocacy because they go with me to the events and give me their insights. Really, nurses are advocates, too."

*Advocates in Action is one of seven Advocacy for Public Policy Change (APPC) grants of the Ohio DD Council.

For more information, contact: Jackie Martin, (614) 267-5071v/tty, (614) 267-4550 fax, cpo@iwaynet.net

Resources & Announcements

Caregivers and Personal Assistants: How to Find, Hire and Manage the People Who Help (or Your Loved Ones)
-Alfred H. DeGraff

This book was born of the author’s hard experience after a diving accident that left him quadriplegic in his teens. DeGraff didn’t have a book to help him through the learning process of how to provide the personal assistants necessary to get through each day. He learned through trial and error and this book is the result of the accumulated wisdom gathered 30+ years.

The book is highly informative and enjoyable. DeGraff’s friendly writing style makes it easy reading and his frequent anecdotes give a personal touch not often found in "how-to" books.

Book includes information about the three primary means of obtaining personal care assistance:

Cost-free care in the form of family members and friends and community volunteers,
Agency caregivers that are paid and managed by home-care and health agencies, and
Self-employed caregivers that are paid and managed by the individual receiving care.

This unique handbook not only discusses the practical aspects of personal care assistant choices, suggestions on where and how to find personal care assistants, what to look for in the hiring process, and how to forestall potential problems before they arise or become detrimental to the working relationship, but it also covers the subjects of personal relationships, health and safety, the means to ensure the individual’s confidentiality and privacy, and so much more.

"I highly recommend that this book be a part of the library of every person who has to depend on help with daily living functions," says Patti Ruble, Columbus. Ruble, who has had quadriplegia since 1955, has used assistants to help maintain her independence at home and for 19 years at her job with Legal Aid Society.

512pp. Softcover. $24.95 plus $4.50 S&H. Saratoga Access Publications, Inc., 30 Amberwood Parkway, Ashland, OH 44805. (800) 266-5564; www.saratoga-publications.com

Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals
Second edition. 2003.
-Libby Kumin, Ph.D.,CCC-SLP

This updated and expanded edition emphasizes how to maximize the speech and language development of young children, from infants through age 5 or 6.

Book explains the role of a speech-language pathologist (SLP); stages of communication development, and how certain characteristics such as low muscle tone, hearing loss, and cognitive delays can slow progression of those skills

Includes new chapters on: agumentative and alternative communication; articulation difficulties and how to improve intelligibility; and literacy and reading aids.

Also provides checklists on evaluating and treating speech problems, and home activities to help children master each stage of communication development.

368pp. Softcover. $15.96 plus $4.50 S&H. Woodbine House, 6510 Bells Mill Rd., Bethesda, MD 20817; (800) 843-7323; www.woodbinehouse.com

The Inclusive Corporation: A Disability Handbook for Business Professionals 2003,
by Griff Hogan

Because of the Americans with Disabilities Act (ADA) and the enormous market of aging adults coping with impairments, disability has become an important issue for all businesses. This book addresses the issue of disability as it relates to all of the areas critical to effective business management.

Hogan is respectful and understanding of business requirements while presenting disability-related information and resources that business mangers need. Includes important information on:

Legal compliance
Social responsibility
Recruitment
Diversity
Employee supervision
Customer service
Product design and marketing

Hogan, a former ODDC member, is a corporate disability consultant with twenty-five years of experience in the field.

376pp. Softcover. $22.95 plus $4.50 S&H. Ohio residents add sales tax 6.75%. Ohio University Press/UC Distribution Center, 11030 S. Langley Ave., Chicago, IL 60628; (740) 593-1158.

Turning the Financial Corner: From Survival to Prosperity 2001, by The National Endowment for Financial Education (NEFE) for the National Alliance to End Homelessness (NAEH)

Excellent resource/workbook. Direct and easy-to-ready reference for anyone facing a housing crisis. Suggests ways to manage immediate housing crisis and to help find the path to a more secure future.

Chapters focus on:

Facing your money crisis and setting goals
Taking care of immediate housing needs
Using helpful programs and credits
Asking tough questions: money, goals
Finding the right job-where and what to look for, resumes, interviews
Taking charge of spending and debt
Charting your future

60pp. Softcover. Single copies: $2 to cover S&H. AXIS Center for Public Awareness, 4550 Indianola Ave., Columbus, OH 43214. (800) 231-2947.

NEFE@www.nefe.org or NAEH@www.endhomelessness.org

Ramping Up for Profit$
-Tim Daly

Disability awareness and education can make a difference in how companies attract and serve customers with disabilities. This direct and easy-to read book answers the question the business owners might ask, "What’s in it for me?"

People with disabilities have a discretionary income of over $318 billion a year. This book shows how being "disability friendly" can help business owners tap into this market and:

Increase revenues and profits
Eliminate the fear factor proactively - avoiding litigation
Enhance employment
Enhance diversity programs

Daly uses real-life situations to demonstrate how using genuine empathy, understanding with respect, asking questions, and using critical thinking and humor can save companies from potential litigation.

149pp. Softcover. $15.99 plus $4.00 S&H. The Access Group, Inc., 5405 Storm Drift, Columbia, MD 21045. (410) 715-1241; www.accessgroup-md.com

Siblings of Children with Autism: A Guide for Families
Second edition, 2003.
-Sandra L. Harris, Ph.D and Beth A. Glasberg, Ph.D

This book offers practical suggestions about how siblings can be realistically involved in the lives of their brothers and sisters who have autism. Useful for parents, siblings and professionals alike.

This second edition includes new chapters on what typical children actually believe or understand about autism at different ages and how autism continues to impact adult sibling relationships, careers, and caregiver roles.

"The people that endorse this book are top notch and well respected in the field. I highly recommend it," says Tom Fish, Ph.D., Nisonger Center at The Ohio State University.

Fish directs Ohio Sibs an information, support and advocacy organization for and about adult brothers and sisters of people with disabilities. (See Conference, pg. 28.)

180pp. Softcover. $16.95 plus $4.50 S&H. Woodbine House, 6510 Bells Mill Rd., Bethesda, MD 20817. (800) 843-7323; www.woodbinehouse.com

All resources listed in DD Quarterly are available from AXIS library: (800) 231-2947 or axiscenter@aol.com

* October is Disability Employment Awareness Month*

3rd Annual Ohio Adult Sibling Conference
October 31 - November 1, 2003

Radisson Airport Hotel - Columbus, OH

www.ohiosibs.org

In this two-day conference, adult brothers and sisters will gather to:

Share family experiences
Develop new relationships
Hear presentations from state and national professionals
Obtain relevant information
Be recognized as an integral part of the family’s success

Plan now to attend this exciting conference and learn what adult siblings are doing to become the next generation of caregivers, supporters and advocates for siblings with special needs.

For more information or to ask about the availability of scholarships, contact: Tom Fish, (614) 292-7550, fish.1@osu.edu

Registration fee: $70 includes meals and materials.

Make hotel reservations directly with the Radisson Airport Hotel, (800) 333-3333. Mention the Ohio Sibs Conference to receive the special room rate.

Financial assistance may be available from your local county board of MRDD.

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