As a multi-faceted organization, it is not uncommon for RCIL employees to engage in a wide array of tasks. After asking Ollie Pagan, Consumer Directed Coordinator, what her job entails, she quickly says, "Everything." In essence, Ollie works to support people individually, but also connect them across the agency and the community. When a phone call comes in related to an issue or concern that a consumer if facing, Ollie is quick to offer assistance, support, and direction. In some cases that may involve trying to hire an aide, or contacting the case manager from the county level to support and assist the consumer.

The Consumer Directed Personal Care Attendant Program (CDPAP) under which Ollie works, allows to people to receive services that they, as an individual with a disability, directs. With this service, a person can hire, fire, train and direct a staff member to assist them with tasks such as personal hygeine, taking medication, or assistance in getting out of bed so that you could get in your chair to go to work.


Energetic and petite, Ollie is the epitome of an consumer advocate: eager to move things forward, shake things up, and propel RCIL forward. She is proud to remark that over the past decade that she has been working for RCIL she has noticed dramatic improvements within the organization. "They now provide more services, and do more to help break down the barriers of discrimination among the disabled community." She also notes that RCIL has become more of a unified, cohesive group that has made deeper connections with outside organizations. However, there’s always room for improvement. "Consumers should have access to more effective, time-sensitive services. They should not have to wait such a long time for services....there are resources out there for them, but they are hindered by policies and procedures." Many situations are time-sensitive, and out of respect for the unique circumstances of every consumer, especially those lacking strong family support, services should be implemented promptly.
From dealing with distraught parents of an adult child with cerebral palsy and in desperate need of staff, to trying to enroll eager college students unable to obtain the education they desire, there is no doubt that Ollie's work plays a direct hand in changing the quality of people's life.  As she recounts some of her most notable moments with vivaciousness, it is easy to see how compassionate, patient and nurturing she is. "My job is so rewarding. I only wish that I could do more because there is such desperation and need in the community and I only have a limited amount of control," she remarks.
Every individual is entitled to become a productive, contributing member of society. Immense progress has been made in equalizing rights for African-Americans, women and other typical disenfranchised groups, however the same sort of inclusion has not been extended out to individuals with disabilities. Ollie says two key differences is that they are given lower levels of care, and commonly "overlooked." She whole-heartedly stands by RCIL's mission to deinstitutionalize individuals with disabilities and allow them to exercise their right to live independently. Considering the options for appropriate support at home, there is no need to be confined to a space where others are making decisions on your behalf. Ollie continues to work to break down barriers and fight for their rights, adding "thier frustrations are my frustrations."

- Heather H.

The Demise of CLASS

When President Obama signed the Affordable Care Act into law in 2010 he also established a national voluntary insurance program that would have allowed working individuals to purchase long term health related services and supports either directly, or through their employers.

The “Community Living Assistance Services and Support” or CLASS program was initiated in order to provide working adults with a basic cash benefit that was designed to offset the costs of non-medical care for adults with long-term disabling conditions, and was also intended to reduce consumers’ use of Medicaid. Individuals who were participating in the program and wished to remain in their communities would have been assisted with a cash stipend that could help pay for non-medical services such as home care, assistive technology, home modifications and adult day services. As part of a larger health insurance program CLASS’s specific intentions seemed like a smart and affordable winner for people and would also have helped to hold down rising Medicaid costs.

Or so we thought.

This week, after careful scrutiny, Kathleen Sibelius, the Secretary of Health and Human Services, determined that because the CLASS program was voluntary, it was much less financially viable. To maintain program affordability, solvency and ultimately survival, the CLASS program must attract large contributions from the participation of healthy working adults in addition to working adults with disabilities. The next anticipated budget (due out in January) from the non-partisan Congressional Budget Office will no longer include the CLASS program.

Georgetown University’s Health Policy Institute has estimated that over 10 million Americans currently need long term health related services and supports. As the aging population increases and the number of people with disabilities rises, affordable supplemental insurance will be needed more than ever in order to sustain individuals who don’t qualify for Medicaid, can’t afford long term health insurance, and want to remain at home. Paying for long term care remains a major life expense and is often a substantial financial burden for many Americans, especially seniors on fixed incomes. Medicare only provides brief limited coverage. In the end, if the CLASS program is purged from the Affordable Care Act, advocates for the disabled must continue to press on and make every effort to help uncover practical solutions that allow more individuals the free choice to remain fully independent.

-          Kate F.

Money Follows the Person

Imagine having to ask permission to change your address, go to a movie, or take a walk outside alone. For thousands of people with disabilities living in a nursing facility, this is the reality. But new home and community-based programs across the country are changing these systems that have made it nearly impossible for people to avoid long-term stays in care facilities like nursing homes once they’ve entered.

In a nationwide effort to help states remove barriers to community living for people with disabilities, President George W. Bush’s 2001 ‘New Freedom Initiative’, is putting funding where it needs to be. One initiative, the “Money Follows the Person Demonstration Grant” (MFP) allows states to use Medicaid funding intelligently, by helping people voluntarily move out of institutions and move back into their communities. MFP outreach staff work with facility staff and nursing home residents who want to explore community re-entry, in order to identify cost-effective alternatives to institutional care and help facilitate connections to specific programs that will meet the residents’ care needs within their community. By helping to move individuals from institutional settings to the community, states receive enhanced Medicaid funding while at the same time allowing individuals to achieve an improved quality of life.

According to Lisa Mastracco, the MFP Outreach Specialist for the Resource Center for Independent Living, one of the biggest boosts for residents is “learning that there are community care options and independent living programs they never knew about.” Lisa notes that many nursing home residents she meets with wish that they had known about these community programs before they were admitted to nursing facilities.

When institutional discharge planning is attempted, physical barriers that prevent individuals from returning to the community become apparent. When leaving facilities, many nursing home residents must consider what types of services they may need. Some individuals will need personal care and shopping assistance, others may need ramps to regain access to their homes, or other more complicated modifications to allow bathroom and kitchen access. For many individuals with disabilities, the lack of affordable and accessible housing is an additional barrier to community living that can lead to institutional placement. If families, social workers, and discharge planners are unaware of all the programs available that can collectively work together to enable a safe return home, institutional placement becomes the only health care approach. Institutions can be unnecessarily expensive and they remove people from family, and friends, and from participating in the mainstream of life, simply because disabled individuals need some home based assistance within their communities.

Since the start of the MFP program statewide in 2008, hundreds of nursing home residents, facility care staff, and long-term care ombudsmen have been given information and advocacy assistance to enable transitions back to the community. One lesson taken from New York State’s MFP outreach program is that the earlier individuals can be identified, the better. The federal Affordable Care Act offers states that choose to continue to use this grant an extended round of MFP funding to reach even more eligible residents. Making the decision to leave a home or apartment, pack up household treasures and enter a nursing facility is traumatic for most people. Additionally, once the decision has been made to enter a facility, the prospect of transitioning back home is often too overwhelming for many residents even if they could be assisted safely in their homes. Nursing facility diversion is a crucial step in assuring that individuals not needing a nursing level of care get the support services and advocacy they need when they need them.

It has been noted that as of July 2010, 9,000 individuals across the United States have returned to their communities as the result of the MFP Outreach Programs. On average, community-based care is one third the cost of nursing facility care and with the Medicaid program serving even more needy individuals during the current economic downturn, spending tax dollars wisely couldn’t be more important. Providing the appropriate care setting is not only a legal mandate for individuals with disabilities, it is a constructive public policy approach to healthcare.

- Kate F.

Get your democracy on!

On November 8, 2011, polling sites across New York State will open so that voters can elect representatives to a number of seats ranging from Supreme Court judge, mayor, and state representative to name only a few. In Utica, the mayor’s seat is being sought by five local candidates who each believe they can make the city a better place to live. To help voters understand each candidate’s position on local issues, RCIL and the Utica/Rome League of Women Voters will be holding a candidates forum on October 27 from 7:00 to 8:30 p.m. at the Dorothy Smith Advocacy Center on Genesee Street in Utica. The community forum represents a chance for residents to pose important questions to candidates whose leadership will affect our everyday lives for years to come. According to Donna Gillette, RCIL’s policy analyst, “the candidate forum is akin to a town hall meeting where residents come together to exercise their political and social power”. Gillette notes that communities cherish these local races because they give the opportunity to be part of real “hands-on” governance since city officials are typically more approachable and accessible and often live right in the community where the race is taking place.

Once at the polls this year, all voters will be using paper ballots and ballot scanners to cast their votes as the entire state has made the switch from old lever machines as mandated by the Help America Vote Act. The paper ballots can be used easily by voters with disabilities. Even those individuals who typically need assistance with paperwork through a ballot marking device at each site can cast private and independent votes. College students can also vote in their college communities and are encouraged to do so as issues of transportation, the environment, safety, and taxes impact their college experience to a great degree. Taking advantage of local candidate forums like this offers residents the chance to be active participants in the American democratic system. Making a decision about who to vote for should be based on knowledge of each candidate’s world view and priority agenda and where those fit with one’s own ideas. The challenges posed by shrinking federal and state budgets means that local policy-makers are having to re-think how to provide important public services in ways that make the most impact. Deciding which programs and services will be cut and which will be kept depends in large part on where residents stand on the issues and the long-term effects of making budget decisions.

If local garbage collection was cut, what would the health and environmental implications be when homeowners and tenants are forced to deal with the overflow at greater cost to themselves or by the illegal dumping that would result? What would the unintended consequences of cutting public health be when free or low-cost infant immunization programs are eliminated or reduced? What would the impact of increased property taxes be on an aging Social Security-dependent tax base? It is vital to have representatives who can work through all of this while assuring that communities can provide for themselves and their futures.

It is up to us to demand that our representatives are up to this challenging job.

Attend a candidate’s forum, take a friend to vote, or write a letter to the editor - just get involved. Complaining about what’s wrong is easy. It’s doing something about it that takes a bit of effort.

For more information about local races and information on polling sites in your neighborhood, visit the NYS Board of Elections website at http://www.elections.state.ny.us/. Deadlines for registering to vote are coming fast and are included here for your reference.

 - Donna G.

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.