TRC at Chautauqua Symposium a success

With the stately Athenaeum Hotel as its backdrop, majestically sitting on the historic, lakeside grounds of the picturesque Chautauqua Institution, The Resource Center played host to a two-day Symposium titled, “Supporting Individuals with Disabilities: A Changing Landscape.”

Day one of the event was held entirely at the Athenaeum and featured six nationally renowned speakers who offered their personal insights and experiences on a wide range of topics and issues facing those with disabling conditions. 

“We are very fortunate to have these individuals with us here today,” remarked Paul Cesana, TRC’s Executive Director, during his welcoming address.  “We are about to participate in a very exciting process, to reflect on how the lives of those with disabling conditions are interwoven with family and friends, and to reflect on the cultural differences as well.  We hope this symposium will energize us and engage us all.”

The first speaker to energize and engage the audience was John Kemp, the Chief Executive Officer of ACCSES (formerly known as the American Congress of Community Supports and Employment Services).  John, who has prosthetic limbs and uses a scooter to get from place to place, is animated and passionate about his work and making sure everyone has access to the same opportunities.

In the photo to the right Victoria Trass Bardo, TRC’s Special Projects and Events Coordinator who handled most of the logistics for the symposium, and Paul Cesana present a painting to John Kemp.  John was unable to stay for the full symposium, so TRC gave him his painting at the conclusion of his remarks.

“Civil Rights, civil rights, civil rights!” started John.  “We need them, and we’ve worked hard for them.”

His presentation focused primarily on key legislative initiatives connected to health care and Medicaid.  As a lawyer, he also talked about the legal issues those with disabilities face and how difficult it has been over the years to define and prove one’s condition in a court of law.

He also spoke in great detail about civic engagement, such as the notion of overall participation in the voting process.  He referenced the progress of the Americans with Disabilities Act and the Help America Vote Act, but adds more must be done.

“Where are our candidates for office with disabilities,” he challenged, “to carry our message forward?”

John also introduced the idea of core values and spoke on the concept of disability identity and how it becomes lost to so many of those with a disabling condition. 

“If I want a person to be accepting of me, I need to be accepting of them,” remarked John.  “I help others because I get help.”

The next speaker to take to the podium was Mary Ellen O’ Keefe, a Clinical Nurse Specialist in adult psychiatric mental health in Bellingham, WA.  Her presentation centered on giving those with mental health conditions a much better quality of life. 

Her data slides focused on emerging trends and how treatment programs often do not meet the needs of the individual.  The majority of her presentation looked at what’s called “the chronic care model of treatment.”  She outlined the framework of the various steps and overall outcomes she and her staff go through to treat someone.  To illustrate her points, she also used real-life examples of people she has helped.

“It’s also important to educate the clients as well,” commented Mary Ellen, “and provide information not only on an individual level, but a program level as well.”

Following Mary Ellen was Paul Marchand, the Director of the Disability Policy Collaboration of The Arc and United Cerebral Palsy.  His role was to examine the impact of the recently passed health care reform on those with disabilities.

“You’re looking at an authentic lobbyist,” he joked.  “You essentially pay me to protect you from the people you elect.  And, every member of Congress who wants to get re-elected is scared right now.”

He spoke quite a bit about the Federal Medical Assistance Percentages (FMAP) funding, or the federal matching rate for Medicaid programs.  That’s the money the federal government provides each state to fund disability, poverty and aging programs.  And given the status and condition of the federal and state budgets, that funding is “putting a tremendous strain” on governments.  A two-year, $87 billion extension of FMAP expires December 31.  President Barack Obama has proposed an additional $24 billion to continue the enhancement of the program, but the House of Representatives and the Senate versions of the bill have yet to be reconciled.

“So, we have a total stalemate,” said Paul.

Many states, he said, budgeted the dollars that the President proposed.  “If the states don’t get their money, there will be huge cutbacks,” said Paul.  He said Congress must “somehow pull a rabbit out of the hat and prevent a disaster from happening soon.”

Paul added that America must revamp the way it operates and funds its two major programs for individuals who are poor, disabled and/or elderly.  “We cannot sustain Medicaid and Medicare the way it’s going now.  As a nation, we will be in deep stuff.”

He also spoke at length about the new Affordable Care Act and what it looks to achieve in the areas of long-term services and supports, the creation of an insurance program, the payment of medical bills, and employer provisions.

Of particular interest to individuals with disabilities is the Community First Choice Option, a provision of the health care reform that allows states to offer home- and community-based services through Medicaid in order to move people out of institutions and eliminate waiting lists for residential placement.  States would receive an additional 6 percent in Medicaid funding for participating in the Community First Choice Option, with the money being able for transition costs such as putting a down payment on an apartment and buying furniture.  State would have to provide person-centered services in the most integrated environment.

The program begins October 1, 2011, and Paul urged audience members to ask their Senate and Assembly representatives to adopt the program in New York State.

He also called on every member of Congress to help those with disabling conditions.  Paul went on to say that he will be meeting with leaders in the U.S. Senate to discuss these issues and look for guidance.

“We need bipartisan support.  Bipartisanship is not happening,” he concluded, “and without bipartisanship, there never has been a disability law passed.”

Following lunch, the keynote speaker was Dr. Thomas Pomeranz, President and CEO of Universal LifeStiles, LLC.   The title of Tom’s presentation was “To Boldly Go Where Everyone Else Has Gone Before.” 

“We are in a period of seismic change,” Tom started off by saying, explaining that tremendous pre-natal and post-natal advancements have been made to reduce the severity of disabling conditions or eliminate them entirely, while individuals with disabilities have begun gaining the power to hire and fire the people who provide their services.

During his passionate speech, he implored the audience to gain a better understanding and sensitivity to the problems and issues those with disabling conditions face when seen as “different or disenfranchised.”

He spoke on the importance of family and how those with disabling conditions should have the freedom to experience other things of value in their life, such as a job, education and friends.  He called for those with disabling conditions to be given more control of their everyday lives, noting that often people with disabilities are not afforded the opportunity to select their food or choose which brands of soap and toothpaste they use – simple freedoms that most other people take for granted and would be loath to let someone else select for them.

“Someday, we will look back on this, and we will say, `Shame on us,’” Tom said.  “We can’t rest until the quality of life of the people we support emulates that which we would want for ourselves and our loved ones.”

He continued to throw out food for thought, gems like, “barriers causes handicaps, not disabilities,” how the word “special can be taken to mean segregation when talking about people with disabilities,” and the difference between “being in a home or and being at home.”

Tom maintained that positive changes in the ways people with disabilities are perceived and treated must come from the rest of the individuals in society, and that those changes can’t simply be legislated.

“Laws may keep some bad things from happening, but they’ll never make good things happen.”

Tom also cited Danish culture, which he referred to as “Janteloven” – a notion holding that “no person is better than another.”

Following him, speaker Dr. Marie Eaton gave an eye-opening account of how children with disabilities live in other parts of the world.  Marie, Professor of humanities and education at Fairhaven College of Interdisciplinary Studies, Western Washington University, spoke of her travels to Kenya, Thailand and India.  Slide after slide, she took audience members into the desperate conditions faced by millions of children with disabling conditions in developing countries. 

“A large percentage of these children,” commented Marie, “are branded as cursed and are hidden away.  They have no access to services.” 

There is a long list of issues these children and their families face, including cultural views, poverty and lack of access to care.  She talked about the notion of karma as well as the stigmas these children and their families face. 

“Poverty is the magnifier,” Marie said.  “When living in brutal poverty, no one is thinking about intervention; you’re thinking about food, putting enough rice in the bowl so your family doesn’t starve.  Kids suffer from poor nutrition and are underweight; they face a lack of access to clean water; there’s a spike in polio cases; and there are significant economic issues.”

Lastly, James McClelland, President and CEO of Goodwill Industries of Central Indiana, took to the podium to discuss workforce trends and how to increase participation of those with disabilities in the global job market. 

“The war on poverty,” said Jim, “has been a miserable failure.  And workforce participation and disability spending in this country is not moving in a positive direction.  Low participation of disabled workers is a misalignment of incentives and supports.”

Globally, he talked about how “employment opportunities for people with disabilities are really quite limited.”  For example, many companies in Korea would rather pay a fine before hiring anyone with a disability.  Here at home, he spoke of the federal AbilityOne program and how in 2009, that initiative put 41,000 people with disabilities to work, to the tune of  $440 million in wages and $2 billion in sales.

“AbilityOne works, and the goal now is to double the amount of jobs created by 2015,” said Jim.  “We need more this type of program in government and in the private sector.”

He encouraged companies to use all available means, and different approaches, when it comes to finding a solution to putting those with disabilities to work.

“One size does not fit all,” concluded Jim. “Pubic policy must be aligned to allow people to work.”

Before breaking for the day, symposium attendees were asked to complete a survey about the event and to sign up for the next day’s activities, which included tours of various TRC programs and small gatherings with the speakers from Day one.  The speakers then were treated to a reception at the Chautauqua home of R. Michael Goldman (the Treasurer of TRC’s Board of Directors) and his wife, Barbara.

Day two of event was a bit less formal, as those who wanted to hear more broke into different groups at various TRC sites.  Facilitated by Tess Kerzner, TRC’s Children’s Services Coordinator, Dr. Marie Eaton continued her discussion about children’s issues and education at the Michael J Raymond Center.

Led by Steve Riczker, Director of Health and Health-Related Services, and Katie Knaak, Director of Social Services, Paul Marchand continued his presentation at the Raymond Center as well, on national healthcare reform. 

At the Jamestown Work Center, and facilitated by Nancy Ingram, Assistant Executive Director for Service Operations, Jim McClelland took questions about his topic of employment. 

At the Passages Continuing Day Treatment Program on West Eighth Street in Jamestown, Michelle Williams, Director of Mental Health Services, led the discussion from Mary Ellen O’Keefe, who continued her presentation about mental health recovery.

And lastly, at TRC’s administrative offices on Dunham Avenue, Virginia Vath, Assistant Executive Director for Quality Assurance and Quality Improvement, Staff Training/Development, and Compliance, facilitated Dr. Thomas Pomeranz’s discussion on the application of Universal Enhancement.

Following the various dialogs, all the groups convened for lunch in TRC’s Conference Center at Dunham Avenue to hear overviews of the results of the morning dialogs.

Michelle and Mary Ellen were the first to speak.  Michelle said the session at Passages involved staff and individuals who participate in the program, so there was some good dialog between them and Mary Ellen.  They discussed the pending conversion of TRC’s Continuing Day Treatment Programs to the PROS (Personalized Recovery Oriented Services) model, a comprehensive recovery oriented program for individuals with severe and persistent mental illness. The goal of the program is to integrate treatment, support, and rehabilitation in a manner that facilitates the individual's recovery. Goals for individuals in the program are to: improve functioning, reduce inpatient utilization, reduce emergency services, reduce contact with the criminal justice system, increase employment, attain higher levels of education, and secure preferred housing.

The switch to PROS is “going to be rough,” Mary Ellen said, because under the old recovery model, “clients have been trained to be dependent.”  She said TRC’s Counseling and Psychiatric Services staff will be “responsible for taking a health care system and match it to the needs of the clients.”  But she added that TRC is well positioned to make a successful change to PROS.

“I’m totally impressed with what you’re doing here,” she said.

Steve and Katie said that their session with Paul covered various aspect of healthcare reform.  Katie said part of the discussion centered on how the health care changes will affect individuals with disabilities who receive supports from TRC in community-based settings.  Steve added that the group also discussed the wellness component of the health care reform and whether those initiatives will keep people out of long-term care

In recounting the dialog with Jim, Nancy reported that he encouraged Allied Industries, TRC’s manufacturing and employment division, to diversify its products and services within reason, and to maximize our use of the AbilityOne Program.

Jim added that TRC should try to recruit “circles of volunteers: to work with individuals with disabilities to identify their personal goals “and find ways to make them reality” by accessing available resources.

Tess reported that in the dialog with Marie, discussion focused on the continuum of services available in developing countries vs. those available in the United States.

Marie added that we need to keep up the pressure to make all societies more inclusive.  She cautioned, however, that the United States should not try to force its systems and values on other countries, because what works well here may not work in countries with different values and traditions.

Virginia said there were diverse segments of people in the session with Tom.  Tom first came to TRC several years ago when the agency was undergoing some major challenges, and during his first visit Tom stated that overall the agency was doing a good job.

“We do have great staff,” Virginia noted.  “We always need to continue to strive to do better.  We need to continue to advocate for services for the people we serve.  We need to demonstrate those skills we want to see in our workforce.”

Tom noted that having worked with TRC staff over the years, he has seen “a dramatic evolution” in attitude.  He urged staff to continue treating the individuals we support with dignity and respect, which includes speaking in an age-appropriate manner.  “Focus on your behavior,” he said.

Tom also issued a challenge, saying that based on what he has seen at The Resource Center, “there is no reason on earth why TRC cannot be identified as the foremost provider of services in New York State” within a few years.

Paul Cesana wrapped up the two-day symposium by offering his appreciation to those who attended.  “I want to thank all of you for participating in our first-ever symposium, an event that I hope provided us with many different elements of reflection, helped broaden our understanding of trends and energized us to energize each other.  Thank you, and I look forward to next year’s symposium.”

At the end of the session, the speakers were presented with paintings created by individuals in TRC’s “Creations” art program.  Posing together are, from left, artist Linda Coleson; Paul Marchand; Marie Eaton; artists Becky Bush and Melissa Bailey; Mary Ellen O’Keefe; artists Mary Ford; and Tom Pomeranz.