My Mind Prison

In a country that prides itself on inclusiveness some disabled populations continue to struggle to gain equality, understanding and attention. The National Association of the Deaf’s "Law and Advocacy Center" has affirmed that equal access to all medical services in hospitals and private doctors’ offices has high priority. Health providers often mistake a person who is deaf with a person who has developmental disabilities. Each of whom a has needs, but different ones. This confusion results in a lack of communication accommodations, such as sign language interpreters, that would allow for clear information sharing.

Recently the Resource Center for Independent Living’s deaf advocates LuAnn Hines and Vonne Gulak called on all advocates to make a concerted effort to compel New York State businesses and agencies to abide by the equal access tenets of the Americans with Disabilities Act (ADA). LuAnn and Vonne are advocates for deaf individuals and businesses, helping both groups understand their individual rights and legal responsibilities under the ADA.  The ADA states that hospitals, medical and legal offices, and mental health care providers must provide qualified sign language interpreters on an as needed basis for deaf consumers. Vonne and LuAnn are familiar with the frequent refusals of many health care providers to obtain sign language interpreters and many service providers request that deaf patients bring their own interpreter. Friends and family members may not be qualified to translate complicated medical or legal language accurately and are not considered appropriate interpreters in health care  settings. By law, interpreting services must be obtained by the provider. Since sign language is usually the “first language” of deaf Americans, it is ethically imperative that deaf individuals be accommodated appropriately.

Vonne Gulak writes that “communication is the main cry of the deaf, and that lack of communication cuts people off from the world”. She observes that communication barriers prevent individuals who are deaf from “unlocking their minds” and moving on with their lives. Responding to the need by deaf individuals for health and legal related advocacy, assistive technology and suitable communication accommodations, RCIL has provided knowledgeable deaf advocates, a Lion’s Club Assistive Technology Loan program and also provides certified sign language interpreting services throughout central New York. Without a unified effort by communities to acknowledge that the differences among us need not be permanent barriers, our deaf neighbors will be seen, but not heard. 

- Kate F. 

What do Occupy Wall Street and Disability Rights have in common?

People finding their voice.

At the time of the writing, the number of people protesting in the Wall Street area is growing. Without a designated leader or specific agenda, participants are expressing their anger with corporate greed and the ineffectiveness of government. Similar protests are spontaneously emerging around the country. Where this will go, how much life does it have, and what will emerge is not clear at all. What does seem clear, however, is that people are not satisfied with a political economy that has a growing and blatant disparity between the various social classes.

As government spending at every level is reduced, unemployment remains at 9%, the poverty rate increases, and foreclosures continue. Simultaneously, many S&P companies are increasing dividends and profitability. Rancor amongst elected officials continues while the approval rating of Congress is lower than it was for O.J. Simpson during his trial.

Yes, people are angry.

They are angry at a system that is not solving problems. They are angry at government cuts that look at bottom lines without understanding the ripple effect. They are angry at the tax structure. They are angry at being “graduated” from services. They are angry at cuts in heating assistance when oil prices are up 38% from a year ago.

They are angry about not having a voice.

What is taking place on Wall Street and cities throughout the country is a demand to be heard. Everyone should listen and they should listen closely – this is what democracy sounds like.

- Burt Danovitz

RCIL OFFERS MEDICAID SERVICE COORDINATION

If you are an individual who is looking for a new Medicaid Service Coordinator due to the recent changes taking place with the Central New York Developmental Disabilities Services Office (DDSO), please note:

RCIL is a provider for Medicaid Service Coordination and can assist you with this process. We are currently serving Oneida, Herkimer, Lewis, Madison, Oswego, and Onondaga Counties.


At RCIL, our mission is to ensure a fully accessible, integrated society that enables full participation by people with disabilities. We also firmly believe that you have the right to remain you. It is our goal to support you to ensure your transition to a new Service Coordination agency is smooth and your needs are met, no matter what they may be.

Please feel free to contact the following individuals to with your transition:

Bridget Ferdula – 624-2521
Michelle Murphy – 624-2546

Thank you.  We look forward to working with you.

Life as an Advocate

On the bulletin board above Nancy Klossner’s desk hangs a pastel-colored invitation to a baby shower, a token of appreciation for the advocacy work she’s done in and around the Utica community.

“It’s sweet,” she said fondly, clearly reminiscing on the aspects that make her work so worthwhile.

When asked what her job encompasses, Klossner just smiles, shaking her head at the breadth. In the case of the invitation, Klossner had helped a young pregnant woman find affordable furniture from a local Catholic organization.

But in fact, as Disability Rights Advocate, she seems to do just about everything. Working with whoever walks in the door at RCIL she will assist customers in paying bills or rent, discuss alternative housing opportunities or suggest ways to look for work or attain a GED.

Often this involves referring them to other organizations for subsidized housing or personal care assistants or communicating with both governmental entities and community-run organizations to provide each of the services needed.

“Most of my job is listening, hearing what the customer has to say,” Klossner continued. “Sometimes I want to just jump right in and tell them what they should do and how to do it, but it’s really important to listen.”

“Empowering instead of enabling” is emphasized for RCIL advocates, Klossner noted, helping to encourage and build confidence rather than setting up a direct, step-by-step process. “We teach and mentor but they need to do it themselves,” she explained.

Since she started with RCIL in 2008, Klossner works with up to ten customers a day and a total of 180 over the last twelve months. A few of these cases have been open throughout the last three years, others are closed much more quickly, all based on the needs and goals of the individual.

Klossner related the story of a young blind woman she’s working with to find a more appropriate and enjoyable living situation. As well as navigating and working with the ideas of family members and the housing authorities, Klossner is also discussing possibilities for the woman, a talented pianist, to audit music classes at a nearby university.

“I want to help people reach their goals,” she noted, simply.

- Kate J.

Recession Over? Poverty at Record Breaking Levels!

The headlines are screaming poverty!!! The U.S. Census Bureau reports the official poverty rate for the nation for 2010 was 15.1%, up from 14.3% for 2009, with 46.2 million people in poverty, an increase of 2.6 million since 2009. Here in mid 2011, from all observations, it is most likely still rising. Record numbers are seeking assistance for their most basic needs – healthcare, food, housing.

Although the “Great Recession” officially ended in June 2009, the ranks of the poor is growing. Close to 104 million people or more than one in three were either poor or “near poor” (defined as a three person family with less than $35,000 in income in 2010). Continuing high levels of joblessness, and reduced wages hit low- and moderate-income people especially hard in 2010, with unemployment highest for those with little education, for people of color, and for woman-led households.

Poverty remains disproportionate and high for children. “We know that persistent and deep poverty threatens children’s opportunities fro a healthy productive life”, said Deborah Weinstein, Executive Director of the Coalition on Human Needs. Even with Unemployment Insurance, the Earned Income Tax Credit, and SNAP/Food Stamps working to lessen the affects of living poor, more and more people continue to barely get by.

We cannot allow members of Congress who wish to reduce the federal deficit by slashing Medicaid, food stamps, and low-income tax credits to be successful. These supports have prevented some of the worst effects of living on no, or low wages. Efforts to reform should rely on supports to assist people to live and work as independently as they can, not remove supports that improved the lives of so many people in our city, region, and country.

- Dave L.

Workforce Bill needs to reach higher

With flat job growth in August it’s becoming clear that the current recession is still quite resistant to federal recovery efforts aimed at creating new jobs and new business. The Workforce Investment Act (WIA) is a key tool in recovery to assure that workforce funding is high impact and provides protections for individuals with disabilities who face additional barriers to employment.

As part of a larger workforce bill that sets and funds workforce programs across the U.S., Title V of the Workforce Investment Act 2011 Bill (WIA 2011) attempts to update the Rehabilitation Act Amendments of 1998 setting out the rights of individuals with disabilities to services leading to training and work. This bill is huge for individuals with disabilities who face staggering unemployment rates as well as high-school drop-out rates at twice the level of non-disabled individuals. The U.S. Senate Health Education Labor and Pension (HELP) Committee released a discussion draft of the bill recently and we have concerns that the legislation doesn’t go far enough to stop decades-long practices that allow employers and programs to discriminate. Even worse, draft language in Section 511 could make the situation even worse.

Section 511 of Title V of this bill is particularly troubling because it sets out a process for state vocational rehabilitation agencies to eliminate integrated, competitive employment options for certain youth with disabilities. The “checklist” of sorts created by this section is really a guide on how to place youth into sub-minimum wage settings through a determination that they are incapable of achieving mainstream (competitive) employment. The intent of the Rehabilitation Act is to provide opportunities for employment, education and training by removing barriers faced by individuals with disabilities, particularly those with the most severe disabilities. Individuals with severe disabilities are especially vulnerable to discrimination through policies and practices developed over the years, allowing for sub-minimum wages for certain groups of individuals. New York, for instance, continues to offer preferred contracts to “workshops” that allows these employers to pay subminimum wages to disabled employees. Studies are showing that individuals placed in these sheltered environments seldom leave. Without the ability to earn even minimum wage, to work full-time, to have employer-based health insurance or retirement benefits means that individuals placed there are destined to lives of poverty.

Rather than provide a checklist that allows counselors to opt students into sub-minimum wage environments, the legislation should require a minimum duration of vocational rehabilitation services leading to integrated, competitive work. We should raise expectations for youth and presume that each one is capable of working and living in mainstream society. The overarching intent of WIA is to increase the prosperity of workers and employers and to lay the foundation for economic growth of communities and states, and to increase our global competitiveness as a country. The low achievement bar that we’ve set for individuals with disabilities continues to trip up our attempts to realize individual and societal prosperity. If WIA is to keep with our goals to eliminate barriers faced by individuals with disabilities to realize their full potential, it must start by providing youth with the tools they need to go to college, to have meaningful careers, and to create strong families of their own.

State initiatives to limit or eliminate funding to sub-minimum wage employers or segregated day settings include Vermont, Washington, New Hampshire and Tennessee. The impetus for states to move their employment systems away from sheltered settings to community-based competitive approaches is based in existing federal law and directives yet remain the exception in practice (Americans with Disabilities Act , President Bush New Freedom Initiative). To require state vocational rehabilitation agencies to first do everything in their service power to move eligible youth with disabilities to independent living and competitive employment requires strong language. Setting an expectation for failure through the current 511 language negates our ability to set the high bar.

Because of the strong focus now on deficit reduction, the WIA 2011 mark-up has been postponed with no new date yet set for review. It’s time to let HELP Committee members know that we do not accept the section 511 language as it stands.

What we do require is the provision of employment and education services that allow youth with disabilities to move to integrated lives, not lives of poverty and certain isolation. Democratic Senators on the HELP Committee are Tom Harkin and Patty Murray who can be reached at Andrew_Imparato@harkin.senate.gov and Scott_Cheney@help.sentate.gov respectively. HELP Committee Republican Senators Mike Enzi and Johnny Isaakson can be reached at Kelly_Hastings@help.senate.gov and Glee_Smith@isaakson.senate.gov respectively.

To read more about the WIA 2011 draft legislation visit http://www.workforcealliance.org/federal-policies/workforce-investment-act/wia-documents/wia_titlev_discussiondraft_2011-06-16.pdf

- Donna

SSA Disability Fund Going Broke-Real Crisis or Scare Tactic?

The answer to the question is yes. The Social Security Disability trust fund, one of the three main trust funds (Retirement and Medicare are the other two) supported by FICA tax withholding from paychecks is “cowering” under the weight of a “perfect storm.”


The combination of a lousy economy and stampeding baby boomer populations has caused a real crisis in fund reserves. Those filing for disability claims due to aging and associated ailments, the lack of available jobs in the economy causing more of all ages to “take a shot” at disability. All this adds up with over 50% more claims filed now than just 20 years ago. With more people receiving benefits each succeeding year, the fund is moiving towards a breaking point by 2017 according to the latest projections.

Now looking at this realistically, will the President and our legislators actually allow this to happen? History, says no. The Social Security system has been around for over 75 years. It is the most significant financial foundation for about one in five US citizens. If the economy improves (hopefully sooner than later) the projected shortfall will move further in the future without any systems change. There are many other options such as borrowing temporarily from the larger Retirement Trust fund to raising taxes and/or lowering projected benefits for those born after a certain year.

The real solution is for legislators to find the right formula that can keep the entire Social Security system solvent for another 75 years. This will certainly entail changes to what we have now, but it WILL be there for future generations…

- Dave L.