Second annual “The Resource Center at Chautauqua Symposium” held

Angela Kerins, the first speaker of the Symposium

On the picturesque shores of Chautauqua Lake, The Resource Center held its second annual “TRC at Chautauqua Symposium” August 16 and 17.

Day one was held inside the Chautauqua Suites Meeting and Expo Center, and it featured local, regional, national, and international perspectives regarding complex and critical issues facing individuals with disabilities and their families.  Paul Cesana, The Resource Center’s Executive Director, welcomed the audience and prepared attendees for what would be taking place over the course of the symposium.

“We are here for an exciting time, a sobering reflection as we make our commitment to support those with disabling conditions in a changing landscape,” Cesana said.

The international speakers were Angela Kerins and Frank Flannery.  Ms. Kerins is the chief executive of the Rehab Group, a not-for-profit organization that delivers person-centered services to 43,000 people with disabilities, older people and others who are marginalized in Ireland, the United Kingdom, Poland, and the Netherlands.  Flannery is the immediate past president of Workability International, the world's largest organization representing providers of work and employment services to people with disabilities.

Among the points Ms. Kerins made was that because the concept of disability affects every governmental department, the interests of people with disabilities must be taken into account when crafting any type of legislation.  She said that while some people may object to the costs of incorporating disability protocol unto legislation, “if you include disability impacts at the beginning, it’s easier and cheaper than trying to retrofit disability policy into a program where it didn’t exist.”

She said Ireland’s recently developed National Disability Strategy seeks to give individuals with disabilities and their advocates “a place at the table” when developing policy.

Ms. Kerins said that while the worldwide economic downturn has delayed the implementation of the National Disability Strategy, it may also provide the opportunity for radical change in the availability and types of services and supports for people with disabilities.  Invoking the proverb that “smooth seas make a poor sailor,” she said that those disability service providers that are best able to adapt to the challenges brought by the global recession will be best positioned for future success.

But success must be tempered by reality, and it must come in a way that benefits everyone, according to Flannery.  That means finding solutions that work for businesses and taxpayers (the government) in addition to people with disabilities.  And in developing services for people with disabilities, service providers and advocates had better deliver on the promises they make – otherwise, critics will point out the shortcomings and the 90 percent good that arises from a new initiative will be overshadowed by the 10 percent that was bad or ineffectual; Flannery said.

Along those lines, he warned that if the mainstream service-delivery model (providing person-centered supports in community-based settings) doesn’t work, some people may look back at the days when people with disabilities loved in institutions (“human dumps,” according to Flannery) with rose-tinted glasses and advocate for a return to those ways.

On the employment front, he noted that many countries are moving away from the “sheltered workshop” model (providing employment opportunities in segregated settings) in favor of employing people with disabilities in “open employment” settings (known in this country as “community-based employment”).  Flannery said being able to work in open employment settings is good for a person’s health, income and social status.

He said that many European countries use a quota system to ensure that people with disabilities are adequately represented in the workforce (for instance, if a company has 20 or more employees, 3 percent of them must have disabilities).  Many countries also have mandated that people with disabilities must be paid at least the prevailing minimum wage, with the government subsidizing businesses the difference between what people with disabilities earn and what they produce.

Flannery also referenced efforts to do away with what he called the “benefits trap” situation that exists in the United States and other countries, in which people who receive government assistance are reluctant to seek employment because they risk losing their benefits if they have a job.  If they take a low-paying job and lose their government assistance, they and up in a worse financial situation than if they don’t work.

“A job offering minimum wage is of no interest to you, because you simply cannot afford to take it,” said Flannery.  He noted that some countries have adopted policies of giving people with disabilities incentives to work be allowing them to keep some of their benefits.

In discussing how to prepare people with disabilities to enter the workforce, Flannery emphasized that education is key.

“If you don’t get the right education at the very beginning, you’re going to be at a tremendous disadvantage for the rest of your life, and you will always be trying to catch up,” said Flannery.  He added that while using computers can enhance the life skills of people with disabilities, computers aren’t necessarily good at preparing people to be employed.  He said education for people with disabilities should focus on teaching skills that are required in the labor force.

Another speaker who discussed aspects of employment of people with disabilities was Elmer L. Cerano, who serves on the NISH Board of Directors and is the Executive Director of Michigan Protection & Advocacy Service, Inc., an organization that represents the rights of individuals with disabilities to make their own choices based on what they want, not what their families or service providers think is best for them.

“Our goal is to guarantee the pursuit of happiness, not guarantee happiness,” said Cerano, explaining that while sometimes the choices people make may not result on the intended ideal outcomes, people still must have the right to determine what they think is best for them.

NISH supports community rehabilitation programs (such as The Resource Center) in securing federal contracts through the AbilityOne Program, which mandates that some government contracts must be set aside for agencies employing people with severe disabilities.  Cerano said that while the law that established the AbilityOne Program is a good law, it hasn’t been modernized in 40 years.

People with disabilities who work on AbilityOne projects work in segregated settings in the sense that at least 75 percent of the people working on federal contracts must have a disability.  The National Disability Rights Network earlier this year released a report purporting to prove that such segregated work settings exploit people with disabilities.  Cerano said the report was flawed but that its release created an opportunity for a national discussion on employment of people with disabilities.

The central themes of that discussion are similar to those mentioned by Flannery.  By taking away financial benefits when people with disabilities find work, artificial barriers to employment are created.  If people with disabilities are paid the federal minimum wage regardless of productivity, businesses will be disinclined to hire them; if people are paid according to their productivity (a process called the “deviated wage system”), steps must be taken to ensure that employers don’t abuse the system.

Cerano said the best solution is to change ideas about how people with disabilities are employed.  He said that rather than creating a job and trying to force people into doing that type of work, instead efforts should be made to identify a disabled person’s abilities and then find ways to create a job that takes advantage of those abilities.

“The fair question is, `Where do you want to work, and how do we help you get that kind of job?’” said Cerano.  He added that for people with disabilities, the choice often is between having a relatively good-paying job in a sheltered workshop doing work they may not enjoy, or earning a low wage doing work they enjoy at a community-based job.

This notion of self-determination was at the forefront of the presentation made by the husband-wife team of David Morlock and Dr. Maggie Buckley, who spoke about their family’s experience with a self-determination project for Dr. Buckley’s daughter Carly.

Several years ago, Carly, who has severe cognitive disabilities, was having difficulty adjusting to her Day Habilitation Program – she was stressed, and she and her mother were becoming more isolated.  Dr. Buckley, a school psychologist, was considering giving up her job so that she could tend to Carly.

Then, Dr. Buckley attended a conference on self-determination and was amazed at what she learned.  “I didn’t think anything like that would be possible for us,” she said.

Through her self-determination plan, Carly has a staff person who works for Carly.  Together, with input from Dr. Buckley and Morlock, a plan was crafted that sees Carly doing the things she enjoys doing – volunteering at an organization that rescues horses, and indulging her passion for cooking.

In the five years since Carly’s self-determination plan went into effect, she has developed a number of new skills and has become more appropriate in social situations.  She is living a life that is meaningful, a life that is of her choosing.  Dr. Buckley and Morlock emphasized that Carly’s staff person works for her, not for them, and that Carly is the only one who has the power to fire the worker.

Morlock, a Self-Determination Staff Mentor, said that with self-determination, personal and professional boundaries between Carly (or anyone with a disability) and her staff person are unclear, but he views this as a good thing that results in a form of “power sharing” between the two.  And he said self-determination relationships result in “mutually beneficial sharing of energies” between the individual and the staff person.

Dr. Buckley and Morlock said Carly’s self-determination plan has succeeded because of Carly’s circle of support, which includes her family, friends, service coordinator, and service broker.  The two speakers said people with disabilities still do not have a true place in the community at large, and so community connections are imperative to reducing the social distance between people with disabilities and typically developed people.

That sense of social distance also was a theme in the presentation of Dr. Frederick Frese.  Frese, the founder if the Community and State Hospital section of the American Psychological Association and past President of the National Mental Health Consumers Association, used humor to discuss his experience as someone with schizophrenia.

He said that mental illness continues to have a huge stigma attached to it, and that he has met many influential people (military officers, judges, lawyers, elected officials) who have schizophrenia but are hesitant to admit their condition.  Frese said many people with schizophrenia, fearing the potential ramifications if their condition becomes known, only are comfortable acknowledging their illness once they retire or reach a point in their careers that they feel secure enough in their jobs to come out of the closet.

Schizophrenia typically manifests itself when someone is in his/her late teens or early 20s, and the condition may be characterized by delusions, hallucinations and disorganized thinking.  Frese’s descent into mental illness began in the mid 1960s when he was a captain in the Marines and became convinced that the reason the United States was not winning the Vietnam War was because communists had brainwashed American military leaders and politicians.  Over the next three years he was in and out of psychiatric hospitals, released only to decompensate while out on the streets and be recommitted.

When he was diagnosed with schizophrenia, Frese was told he never would get better and likely would spend the rest of his life under the psychiatric care of the State of Ohio.  However, because he was a military veteran, he was transferred to a federal hospital.  With medications, he was able to get better.  He eventually got an education and became successful.

Frese emphasized that while medications can make people with mental illness better, “we’re still subject to breakdowns.”  He said people who are deluded don’t realize their delusions aren’t real.  They also aren’t aware when they begin moving from normalcy to delusions, and Frese said he relies on his wife to tell him when he starts to slip from normalcy.

“When you’re dealing with us (people with schizophrenia), please realize this is a very serious condition even when we’re in remission, even when we’re in recovery,” he said.

Frese said that people with serious mental illness are 15 times more likely to be victims of crime than perpetrators.  However, he mentioned the case of Kendra Webdale, the Fredonia native who was pushed to her death in front of a New York City subway train by a schizophrenic man who had stopped taken his medication.  Frese said people with mental illness are no more dangerous than anyone else as long as they’re in treatment and do not consume illegal substances.  He spoke in favor of Kendra’s Law, legislation that arose from her death that allows authorities to force people with mental illness into assisted outpatient treatment if they are perceived to be a threat to themselves or others.

In addition to the main presenters, the first day of the symposium included a lunchtime panel discussion featuring four people with disabling conditions who receive supports from The Resource Center:

• Henry Wesley shared portions of his life story, which included having his parents leave him at an institution for people with developmental disabilities when he was 3 years old.  Henry spent 37 years in institutionalized settings before coming to The Resource Center, and he described the dehumanizing things that occurred to him during his years in institutions.  Since coming to TRC, Henry has led a productive life that has included getting married, being employed and becoming an artist.  “People with disabilities are people,” Henry said.  “We have feelings and can learn just like everybody else.”
• Chris Davis was in a serious automobile accident in 1996, sustaining a traumatic brain injury that resulted in significant short-term memory problems.  He told how The Resource Center helped him obtain a job, and now he is the supervisor for TRC’s vehicle-detailing shop.
• Jennifer Yost has participated in Special Olympics for 20 years.  In 2002, she was selected to represent New York State in roller-skating at the Special Olympics World Games the following year in Ireland.  But Jenn had a fear of flying, so she worked with a mental health counselor at TRC and was able to overcome her fear.  Jenn went on to Ireland, earning two silver medals and one bronze.
• Jeffrey Axelson talked about his personal recovery from mental illness and substance abuse.  Jeff is working on obtaining his bachelor’s degree in social work.  He has a job as a Peer Advocate and Outreach Specialist with TRC’s Counseling and Psychiatric Services, where he assists others challenged by mental illness.  Jeff said the solution for those with mental illness is to focus not on “What wrong with me?” but rather on “What’s right with me?”  Borrowing a quote from Ralph Waldo Emerson that the purpose of life is not to be happy but to be useful, Jeff told the audience that in his work at TRC, “Every day I make a difference in someone’s life.”

 

Following the conclusion of the first day’s presentation, symposium speakers and attendees were treated to a cruise on Chautauqua Lake aboard the steamship the Chautauqua Belle.

The following morning, attendees visited different TRC locations for more-intimate discussions with the main speakers from the first day.  Then people gathered in TRC’s Conference Center to hear the themes that arose during the morning sessions.  After lunch, the main speakers were given framed paintings made by people with disabilities who participate in TRC’s “Creations” art class.

Cesana concluded the symposium by thanking attendees for their participation and promising that this dialog will continue at next year’s symposium.

“We end up being enriched by the relationships and experiences that result from our association with individuals with disabling conditions, and then the richer the community at large becomes,” said Cesana.  He challenged everyone in the room to act upon the themes that emerged during the two-day symposium.

“It is our responsibility to become ambassadors to these thoughts and ideas.”

The Resource Center is making the individual presentations available through its web site, www.resourcecenter.org.