Achieve a Better Life Experience

Disability advocates celebrated this month as the Achieve a Better Life Experience (ABLE) Act was re-introduced on Capitol Hill on November 15. The bipartisan bill will provide tax exemptions for disabled individuals to save money for specified costs including life-long education, medical bills, transportation, or other long term expenses related to their disability. This exemption, however, will not replace Medicaid, Medicare, or Social Security benefits but rather serve to supplement the funds already being received. Since its November introduction by Rep. Ander Crenshaw (R-FL) and Sen. Robert Casey (D-PA), the ABLE Act has been assigned to the Senate Finance Committee to be reviewed before it is voted on by the Senate. Modeled on the 529 college savings plan, the proposed legislation will allow any interest earned in an ABLE savings account to be tax-free. Up to $100,000 can be saved before Medicaid benefits are jeopardized.                                

The bill was previously introduced in May of 2009, though the Congress session ended before a vote could be taken. Its former lack of success was due to “timing alone” according to the NYAPRS ENEWS report. At present, the Act has already garnered support from both parties as well as strong backing from the National Disability Institute, Autism Speaks, and other disability advocacy groups.

The proposed ABLE Act could serve as one viable way for some individuals on Social Security to attain fiscal independence. As the ABLE Act navigates its way through Congress, support of the bill is vital for individuals to have the ability to successfully reach a self-sustainable financial situation and have the cushion of savings to be able to accommodate the unexpected challenges that life brings.The effects of this bill may be strongest for those with access to resources already, but it is nevertheless a strong step in acknowledging the need changes to our tax systems that allow everyone to plan and save for the future. 

- Katie J. 

Group home deaths? Not at RCIL!

When the New York Times delved into New York state data, the unknown, uninvestigated and overlooked deaths in state group homes raised an alert. Over the past months, The Times obtained and reviewed documents containing information on the deaths of each of 1,200 developmentally disabled people – those with quadriplegia, autism or cerebral palsy-- that occurred in state run homes in the last 10 years. The astounding results reinforce the importance of RCIL’s mission in ensuring dignity to all people.

According to the November 1st article, there have been 222 deaths in group or private-run New York homes is documented as having unknown or unnatural causes in the last decade. This averages to about 1 in 6, compared with 1 in 25 in group homes Connecticut, one of the few states that actually releases the data. New York’s information has never been made public.

The article details the tragedies that have ensued from lack of statewide oversight, uncovered or revisited only as a result of the research: Four of the nine residents were killed when a fire was sparked in the group home where they lived in Wells. After the feverish effort to evacuate members and put out the fire, it came to light that there were no sprinklers installed on the porch where the blaze was started and other construction issues that violate state fire regulations. There were further complications with the lack of communication between the home and fire department and an unrealistic evacuation plan based on the lack of mobility of the residents.

According to the Times’ research, deaths due to unreliable individual care or erratic home supervision were not isolated events. Over a quarter of the 222 reviewed cases of death that were investigated by New York state were caused by choking incidents, often with individuals who had already been deemed choking risks. Multiple people have been injured from falling or drowned while bathing when a caretaker didn’t return in time to turn off the running water. Often these accidents occur when there are a low number of staff who don’t follow the designated protocol although there are few, if any, staff member training days to avoid reoccurrence of such preventable deaths. In most cases the liable worker is dismissed from the position although the accountability rarely trickles to the governing members of the institution.

Each of these instances involves the helplessness and dehumanization of the developmentally disabled, as their fate, and ultimately life, can be tied to the capabilities and attention given to them by supports. It highlights the lack of appropriateness within the system, but at its root is the degradation and lack of genuine compassion for the disabled members of the community. “These deaths are marginalized because these sort of people are not valued by society,” said Patricia Taylor, the sister of James Taylor, a quadriplegic who drowned while bathing in 2005. RCIL, like other Independent Living Centers, on the rejection of these inhumane environments. In contrast, basic human respect and equality is the cornerstone of RCIL’s mission. Working with both the individual and natural supports, RCIL works to find solutions that are safe, economically viable, and centered around the individual.

When one in six deaths in New York state group homes is attributed to either unnatural or unknown causes, the assumption of intrinsic human value has never been more essential.

Click for the New York Times article.

- Katie J.

With over 24,000 solutions, RCIL offers the right to remain you

In New York, Centers for Independent Living, like RCIL, are mandated to provide demographic and service related information on an annual basis to their oversight agency, Adult Career and Continuing Educational Services-Vocational Rehabilitation (ACCES-VR) formerly known as VESID. Recently we completed our analysis of demographic data from October 1, 2010 through September 30, 2011.

Over the last four years, we noticed a few shifts in services: a progressively larger percentage of women were served, more people self-identifying with multiple disabilities, and more people are living alone. This past year, over a thousand more people since 2008 came to our center for information and referral, demonstrating increasing need, declining community resources, and increasing complex systems.

Disabilities are typically categorized into four main types: cognitive, physical, mental, and sensory. Under cognitive the largest category is those with learning disabilities. In the physical area, it is orthopedic issues with neuromuscular diseases next. For people with mental health disabilities, emotional and behavioral conditions are most common with mental illness next. For those with sensory problems low vision was first with hearing problems second. As mentioned earlier many of our consumers reported more than one disability. Although our approach is always to listen first, and talk about strengths, the demographic information is helpful in identifying emerging needs.

We assisted about 4,400 persons in the past year from six general racial/ethnic backgrounds with African Americans being the largest minority group served, however, the number of Hispanics has shown the greatest percentage increase. Our consumer base is predominantly working age, with those 25-59 comprising 2,176 people, almost half of our total.

RCIL offers a very wide range of services from advocacy to received benefits, to communications assistance, to guiding youth to stay out of the juvenile justice system, to helping locate and maintain a job. All of these services are provided with one goal in mind – resources for people to live their own lives.

Just during this past year, in addition to fulfilling over 5,000 requests for information and referral, our dedicated staff delivered an additional 19,500 individual services to the children, persons with disabilities, and seniors who depend on Centers such as ours to maintain dignity and independence in their communities.

- Dave L.

Health Homes

Earlier this fall, the New York State Department of Health (DOH) announced a new Health Homes initiative, which will provide services for Medicaid eligible individuals with chronic medical conditions. The program, which will take effect in January 2012 for some counties and by June for all of New York State, was designed as a way to improve health care efficiency and quality by improving communication between the patient and his or her various care providers. To bridge this gap, each enrolled individual will be assigned a care manager to be responsible for the overall management and coordination of the patient’s care.

Health Home were developed both as a way to decrease New York State Medicaid costs and in response to the President Obama’s Patient Protection and Affordable Care Act, the U.S. health care statute that was signed into law on March 2010. Currently, New York’s Medicaid program serves over 5 million enrollees throughout the state, each with very different services and needs.

However, Medicaid recipients with complex and chronic health conditions, albeit just a small percentage of the total, the account for a large percentage of New York state health care costs. Often, the services they require are in-patient appointments that transcend various different medical fields. The result is piles of paperwork, scheduling difficulties, and unclear health care goals.

This lack of communication between facilities or physicians makes it especially difficult for patients to smoothly traverse the current system. As a part of the Health Homes implementation, the installation of Health Information Technology (HIT) will allow an individual’s health care providers to communicate easily and effectively so that all the patient’s needs are met. Either electronically or on paper, doctors will have easy access to their patients’ better-consolidated medical records so that no services are duplicated or forgotten. The personal care manager will help the individual navigate the services that he or she really needs and choose the best healthcare options while minimizing the number of procedures or appointments they must undergo.

In our most optimistic momments, we can see that this strategy could improve service for people who have complex needs and open an new chapter on care. The cautionary flip side is concern that in re-packaging, people loose out on needed services to additional bureaucratic layers.
 
More information is available through the department of health
http://www.health.ny.gov/health_care/medicaid/program/medicaid_health_homes/

An Asylum Left Behind

A battered and dusty suitcase is carefully opened to reveal neatly organized grooming tools; a hair, tooth, and nailbrush and one mirror all minty green and held by straps on the inside cover yellowed from age. Each item waits for an owner that will never return for them. The weathered tag on the case says “Freda B.”, and the suitcase was pulled from a closet at the now abandoned Willard Mental Asylum in New York State.

For photographer Jon Crispin, the objects left behind in this and other suitcases from the Asylum, offer viewers an invitation to imagine the confusing and stressful world encountered by individuals who lived there. A place mostly unseen and unremembered by a mainstream world lived alongside it, Willard represents one building in a much larger network of “insane asylums” that were an earlier attempt in our history to help people with severe mental illness. The thinking was that by bringing individuals to a place where they could receive specialized treatment, they could be “cured” and perhaps even released back to home when they improved. For most families needing help, institutionalization was the only option given. The problem was that for so many at the time, a cure would not be possible because of the misunderstanding of what mental illness was. The very act of separating individuals from their families and their communities only worsened individuals’ chance of recovery.

Crispin’s photo project includes commentary on his blog that includes descriptions of the contents found and speculations about the people that owned the cases collected. Many of the suitcases are owned by the State of New York now and have toured as part of the State Museum’s permanent collection. The works are important because they help to chronicle lives largely untold.

Did Freda brush her beautiful auburn hair while lingering at large windows framing the dayroom? Did family and friends visit often? Can you picture staff helping to celebrate her birthday helping to serve cake and ice-cream as other residents joined in singing “Happy Birthday”? Did someone take her picture and pin it up on a bulletin board to be admired?

The photographs invite us to ask many questions as we consider the possible circumstances that brought hundreds there. The work represents the unique capture of an important time in disability history that for so many ended so badly. Lobotomies, straight-jackets, shock treatments, and sensory deprivation chambers all marked the experiences that patients placed in these institutions endured.

Whether taken there against their will or voluntarily signed in, individuals with mental illness were prisoners of a system that controlled every aspect of their lives once inside. The atmosphere of oppression within the facilities was captured in the movie One Flew Over the Cuckoo’s Nest where head nurse Ratchet abused her power over patients in a system that lasted for decades.

In a case marked with the tattered tag, “Maude K.”, glycerin and ink were still in little bottles alongside paper and arts and crafts tools indicating the owner was a multi-talented artist. Cases belonging to “Raymond H” and “Clarissa Bennet” contained papers indicating previous travel to other institutions. Still others packed away lace and fabric for safe-keeping.

Our understanding of mental illness today seems worlds away from the institutions that marked a solution during the earlier part of this century. Yet saying that we’ve come a long way in treating mental illness doesn’t make up for the lives that were stolen from the patients who were kept there. Individuals with mental illness still struggle today to get the kinds of help they really need from a system that still thinks it knows best. Therapy and drugs might help enable recovery but creating a supportive community where diversity in thought and behavior are really valued is essential. Until we truly embrace the idea that individuals themselves must direct their own lives and choose their own supports, then we’ve really not moved forward nearly enough. The suitcases should be a constant reminder of where we’ve yet to go.

To read an article about Jon’s work, visit a recent NPR spot at http://www.npr.org/blogs/pictureshow/2011/11/02/141934159/asylum-suitcases-found-and-photographed

- Donna G.

Annual Letter from Burt Danovitz, Executive Director

Dear Friends,


The current economic situation is extremely troubling. High unemployment rates, large deficits and cuts in government support for vital programs is the current state of affairs. Simultaneously, more people are contacting us for assistance and services.

Additionally, Hurricane Irene left many people with extensive damages to their homes and businesses. Our building in Amsterdam was damaged as well. Despite the economy and the effects of natural disasters, the Board and Staff of RCIL stay committed to improving and expanding services. The Amsterdam site was quickly repaired and innovative plans for the future of RCIL are being developed.

Rather than retrench, we are busy developing aspirational goals for the future. While budgets are being cut at the state and national levels, we continue to develop and promote programs that are individualized, directed by people who receive them, and increase opportunities for reaching greater potential while significantly reducing costs. If you would like additional information about RCIL and what it does, please feel free to contact me directly.

We appreciate your support, but we need your involvement.

Sincerely,

Burt Danovitz, Ph.D.

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.

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.

Accessible Housing a Key for Seniors

One of our advocates published this article in the Amsterdam Recorder on August 20th. See below:


By KATE FALCON

For the Recorder

When families search for a home they often consider each person’s needs. Families with children often seek a home with a backyard and good schools nearby. Those that do not have a car frequently look for proximity to public transportation. When a family member uses a wheelchair, families may seek accessible housing, but in upstate New York, such homes and apartment are difficult to locate. Needed modifications to existing house and apartments are often too costly for seniors and those with modest incomes. Unfortunately, this situation can force many disabled and senior residents into unsafe and inaccessible housing or to be placed unnecessarily in a nursing home or assisted living facility.

According the New York State Office for the Aging, the average cost for living in a nursing home is around $71,000. In contrast the cost to help support someone in their own home is approximately $13,000. Even accounting for differences in need, the necessity for creating more and better community options is clear.

Adults with Medicaid health coverage needing a high level of care may be able to receive services and supports in their own homes rather than receiving those services in institutional settings, like nursing homes. Created in part through the work of the Resource Center for Independent Living, New York State offers the Nursing Home Transition and Diversion Medicaid Waiver program. Services provided under this program are individualized to keep costs low and only provide what the person really needs. Supports may include services such as personal care and help with shopping and cleaning, but can also include important housing supports such as rental assistance and home modifications such as ramps, wheelchair lifts, roll-in showers, and kitchen alterations to make the home more useable and safe.

Similarly, the Division of Housing and Community Renewal’s “Access to Home” program provides financial assistance through non-profits to property owners to modify existing apartments and homes for low and moderate income persons with disabilities. Changes to flooring, doorways, ramps, grab bars and other safety and access improvements allow people to remain in their home.

Despite the progress that has been made in providing more community-based options New York State still does not have the housing stock to meet the real needs of its community members. To make a difference in the lives of aging and disabled residents, a strong commitment to a long-term plan is needed to allow New Yorkers to “age in place”. By supporting initiatives that fund the construction of new accessible homes and apartments and the rehabilitation of existing housing, we ensure that people can find appropriate housing, despite mobility or cognitive impairments. Initiatives that assist with the cost of home repairs, mobility modifications, weatherization and maintenance services help to encourage the creation of more integrated stable communities where everyone is welcome and represents smart investments in social spending.

Hard Times - Part 2

The other day a consumer was listening to a conversation between two service providers when she suddenly leaned forward and asked me what the word “poverty” meant. Although she didn’t realize it, on that subject she was an expert. She knew all about “living poor” on public assistance and stretching out her food stamps so they lasted until the end of the month. But, what’s “poverty”?

So to follow-up, I asked a few consumers to comment on what it means to be disabled, poor and virtually invisible. (Names have been changed.)

Cora: Cora is a well-informed consumer in her mid-forties. She is meticulous in her clothing saying “People judge you.” An incessant reader, she comments that “I’ve had a library card since I was a little kid.” But years ago, with the onset of a mental health disability, she was obliged her to cut her formal education short. She says that she feels “scared” and “unsure” of herself most of the time, though she says that “I used to be really outgoing.” Despite having her own small apartment and relatives nearby, she is “…really not comfortable anywhere”.

Cora receives Medicaid and Medicare and recently wrote to her Congressman about her fears that the budgetary woes in Washington may cut some of her health care benefits and increase her costs. Her main question: “How would I survive?” Even though she says that her life is “not the life I wanted”, she has voted in every Presidential election since 1988.

Jim: “If I didn’t have a disability I’d still have my life, I lost everything. Bang. All of a sudden my life ended.” Two years ago Jim lost a leg. He had been working long hours to support his family and before his accident he was making $60,000 a year. Jim tells me “I’m lucky if I receive $12,000 a year now. Thank God I didn’t have to move and thank god my children were grown when I became disabled. The system doesn’t care about us. Our legislators have their Cadillac health plans by the grace of the American people.”

After losing his leg, Jim’s social security disability benefits were too low, so he was unable to obtain affordable private health insurance. So he turned to Medicaid. Medicaid told him he didn’t qualify for benefits because he was making too much money from those social security disability benefits. He was still recovering and anxious that he wouldn’t have the critical health care he needed and that future medical obligations might overwhelm him financially. He was then advised to obtain part time employment, and he was subsequently able to obtain Medicaid. Jim and his wife receive $52 in Food Stamps every month. His wife currently has no health care.

Robyn: Like many Americans, Robyn sighs when she says, “I’ve been looking for work for some time. I’m so far in debt.” Robyn was in a car accident many years ago and was diagnosed as quadriplegic. She receives some assistance around her home, but is very independent. Robyn has been trained as a paralegal, has a human service associate’s degree, and even has an accessible laptop computer that she hopes is an incentive for potential employers. She was working towards employment within a job training program for a legal not for profit and loved it, but because of funding cuts, she was let go.

Robyn explains that “my supplemental security income and social security disability are my lifelines, and if I lost my Medicaid services I would probably be forced into a nursing home.” Robyn has three children who visit her regularly and currently resides in a subsidized apartment. She is still unemployed.

Aspirations. Changed lives.

In all the recent discussion about debt ceilings and cuts, it’s vital not to forget what it’s really like “living poor”.

- Kate F.

Upcoming information and training session - July 27th

As legislators are dealing with budget shortfall, defaulting on debts and cutting funding for programs, we need to be active participants in the process.  We’re seeking seniors and individuals with a disability who want to share their concerns with legislators. Do you like to talk about cuts or your experience  government funded services and programs, such as Medicaid?  Would you be interested in writing letters, making phone calls or sending e-mails? Join us on Wednesday, July 27^th, 2011 from 12 p.m. to 1 p.m. at the Dorothy Smith Center located at

1607 Genesee St. , Utica

for an information and training session. Please call Kate Falcon at (315) 272-2928 to register or for questions.

Hard Times (part 1)

The other day a consumer was listening to a conversation between two service providers when she suddenly leaned forward and asked me what the word “poverty” meant. Although she didn’t realize it, on that subject she was an expert. She knew all about ‘living poor’ on public assistance, about using her Medicaid card to get the medication she needed, and stretching out her food stamps so they lasted until the end of the month.

But “poverty”? What did that mean?

Eleven years ago, the 2000 Census recorded that 12.4% of the total U.S. population were below the poverty line. The 2010 Census indicated a 2.4% increase of Americans living in poverty, causing the U.S. poverty level totals to rise to 14.8%. More telling is that 25% of disabled persons are living in poverty in the United States.

Yet Congress recently voted to cut $61 billion in funding for programs that poor families broadly utilize, such as Head Start, community health centers and nutrition programs for women, infants and children. An analysis by the Center on Budget and Policy Priorities found that of $4.32 trillion in proposed spending cuts not tied to the phase-down of war, $2.9 trillion are in cuts to low-income programs.

Of those low income programs, there has been a strong focus on ‘reforming’ entitlement programs that include essential health care services. Some activists and economists have wondered whether the proposed ‘reforms’ have profoundly flawed math and values. Will Medicare ‘go broke’ if members of Congress don’t agree with what seems to be a fiscal ‘three card monte’ game that shifts costs from one source, the government, and slides those costs onto seniors? Is Congress really concentrating on finding conscientious ways to contain expanding health care costs under Medicaid or are they just trying to find quick and expedient grounds to allow states to cut back on key services and eligibility in the form of a ‘block grant’?

Block granting entitlements is not new. In the mid-1990’s the Temporary Assistance to Needy Families (TANF) was among the first such programs to be ‘block granted’. Even as poverty increases across the country, states have wide latitude to restrict cash benefits to needy families. They can also set inflexible work requirements that often fail to consider the recipient’s disabilities, literacy, child care or transportation needs. States can also prevent families from receiving benefits if they don’t meet those mandated work requirements and restrict TANF beneficiaries from counting job training or higher education as part of their work requirement. The result: some recipients to must accept low paying jobs with little hope or opportunity for advancement.

As concerned Americans it would irresponsible to ignore or dismiss our country’s uncertain fiscal health. As citizens we must get involved and insist that our voices be heard and that our legislators seek long term solutions towards a balanced budget that doesn’t harshly and unfairly cut fundamental services for millions of other Americans.

- Kate F.

Give back to those that give

While rarely individuals do good work for the sake of recognition, many are profoundly grateful that their relentless efforts are appreciated. When we see award forms, it’s easy to pass and move onto something else that seem more relevent in our lives. But if you’ve had contact with someone over the last year that you think has really made a difference or change – please give back. The form takes about 15 minutes of your time, but it can offer a lifetime of meaning to someone that really deserves it.

Who do you see, meet or work with this year?

The full form is linked here. See below for the four opportunities:

GENE FIORENTINO SELF-ADVOCATE AWARD
Self Advocacy refers to an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. The Gene Fiorentino Self-Advocate Award was established in memory of one of RCIL’s most committed board member’s, Gene Fiorentino. He was a true advocate for the rights of individuals with disabilities and truly believed in the vision and mission of RCIL.
COMMUNITY SUPPORT AWARD
RCIL is looking for individual(s), community organizations, agencies or businesses that have made an outstanding contribution and increased the availability of support services to persons with disabilities, has served in a volunteer capacity, and/or improved the quality of life for persons with disabilities. Examples of this support may be in the form of (but not limited to): commitment of dollars, in-kind donations and technical support, or campaigns to promote awareness of or action around the needs of persons with disabilities.
PUBLIC POLICY AWARD
RCIL is looking for an individual or community organization that has reflected a commitment to excellence and a resolve in supporting changes in Legislation and Public Policy that has promoted full integration of Civil Rights for people with disabilities. Past recipients of this award include former Senator Raymond Meier and Alice Savino, Executive Director of the Workforce Investment Board along with Assemblywoman, RoAnn Destito. In these cases, the recipients advocated for system-wide changes in public policy that truly support the Independent Living Philosophy.
EMPLOYEE OF THE YEAR AWARD
This individual or team will have provided outstanding, high-quality service furthering RCIL’s mission directly or indirectly, allowing equal opportunity for community participation for individuals with disabilities. Furthermore, the nominees must act in a manner in keeping with the Independent Living Philosophy and have made a significant impact on RCIL or the community. The purpose of the “Employee of the Year Award” is to:

• Support the Agency’s goal of developing and recognizing talent
• Reward Agency’s valued talent by celebrating their accomplishments at the Annual Dinner held in October
• Complement and reinforce the Agency’s mission, vision and values

- Ellen

Rep. Hanna's visit to RCIL

Rep. Richard Hanna from the 24th district joined us at our staff meeting last week. Over the hour he was with us, he talked about the economy, healthcare and the political environment in Washington. At issue this week, and in the coming weeks, is the appropriate balance between taxation and “entitlements” such as Medicaid, Medicare, Temporary Assistance for Needy Families, and Social Security. Rep. Hanna suggested during the dialog that current levels of spending were unsustainable and that he anticipated cuts happening.

If you want to connect with Rep. Hanna, his record or his staff, see below for some options:

• You can call his office to set an appointment to discuss individual issues. For advice on approaching your legislator about policy issues and concerns, call us at RCIL 315-797-4642 and ask to speak with Donna Gillette.
• For how Rep. Hanna voted on any issue, see his Congressional website http://hanna.house.gov/
• Rep. Hanna regularly runs live Town Hall meetings by phone. If you receive one of these calls, consider staying on the line. You can listen and ask questions.

As the deadline for raising the debt ceiling looms, important decisions about the federal budget are being negotiated on a daily basis. This is a great week for contacting Rep. Hanna about how public spending affects you.

- Ellen

Connecting Connections

A core element for Independent Living Centers (ILCs) is to foster the linkages that promote open communication and dialogue among staff and consumers. Despite all the differences in experience, we have considerable commonality in hope, fear, sickness, change, family and every other emotion and aspect of life. Our mission statement includes the bold belief that each person has “the basic human right of participating in society as a self-determining individual.”

You have the right to remain you.

We all must strive to connect with those who are isolated or otherwise limited in their ability to access information that can lead to choices and options that would have gone unknown. Every one of us without exception should be part of this effort.

The opportunity to share information that can enhance the lives of those we meet cannot be underestimated. Sometimes the setting can make the connection more meaningful. RCIL has hosted a “Community Forum for those who are Deaf or Hard of Hearing” several times a year. It has helped create an environment conducive for this unique group to both converse with each other as well as to become aware of topics and ideas that might have otherwise been missed.

All of us should continually be alert to occasions formal and informal, individual and group, where new connections can be made. Some may grow into lasting relationships and others may be a one-time learning experience. Either way it’s  about passing on a chance for a more fulfilling life.

Keep connecting!

- Dave L.

The Importance of Asset Development in Addressing Poverty

In general, poverty reduction strategies are typically categorized as income-focused or asset-focused.

Income-focused strategies for poverty alleviation have their origins in 20th century social policy. These strategies are geared to offering relief for emergent needs, and are often described as “emergency programs”. The purpose of such programs is to address basic needs. While important, these programs address the symptoms of poverty, and not the direct causes. Such programs do not give families or individuals an opportunity to change their circumstances; they simply help families to make ends meet.

Asset-focused poverty reduction strategies provide opportunities to build long-term wealth. Individuals and families with assets are more resilient, and can create sustained wealth to lift themselves from poverty or offer protection against economic decline. While assets allow families to remove themselves from the constant cycle of financial crisis, they also tend to promote a more positive and proactive orientation toward the future. Assets give opportunities for upward social mobility, allowing for more participation in the market economy (such as when buying a home, engaging in postsecondary education, or capitalizing a business).

While both strategies are important, existing poverty reduction methods are almost solely geared to income relief (food stamps and Temporary Assistance for Needy Families are examples). This gives families some relief in their day-to-day lives, but does little to help their financial situation long-term. Asset-building opportunities would break this cycle by providing opportunities for building wealth and embarking on a path of self-sufficiency.

RCIL helps individuals to identify, apply for, and access income assistance programs they are eligible to receive. This can be thought of as poverty management assistance – it may help an emergent situation, but only until the next crisis occurs. To break this cycle RCIL has developed and advocated for programs focused on asset building. This approach is more transformational, and provides real opportunities to move from poverty.

Fundamental policy changes are needed to change from a system that manages poverty to one that eradicates it. The current programs and systems in place can provide some opportunities, but are clearly not enough.
-Quinton

RCIL's 2011 Policy Agenda

We believe if you want to live independently you don’t need permission, you need resources. At RCIL, we provide real solutions to the personal, social or governmental barriers that are stopping your decisions from being respected and realized. We have four decades of experience in providing personally tailored advocacy, information, and training services. In 2011, it’s possible to move from segregated placements to people living in their communities with only the support they need and choose.

RCIL believes that the widespread poverty, segregation, and isolation of people with disabilities is unacceptable, should not be tolerated, and requires change.

Reduce Isolation and Transform Service
Government should not financially support unnecessary or unwanted segregated living. New York continues to discriminate against New Yorkers with disabilities by segregating them in dead-end settings, simply because of a disability. We oppose changes that jeopardize existing programs and services that are shown to help individuals live and work independently in their own homes and communities.

Improve Health
Government should provide individuals with safety-net health and long-term health care service options. Individual choice is essential for quality and cost-effective services that allow the greatest opportunity for independence. We oppose changes that restrict eligibility, place unnecessary hardships on individuals or providers, or ignore individual differences in need or preference.

Reduce Poverty
Government should create and support integrated employment, education, and savings strategies so that individuals can leave poverty. Effective safety-net programs can foster independence by supporting employment and re-entry to education throughout the lifespan. We oppose policies that discriminate against people because they are poor or that discourage work, saving, or asset development.
Our specific reccomendations:

Reduce Isolation and Transform Service
• Enact “The Integrated Services Bill” in New York that presumes all people can benefit from community life. Amend the law so that people with disabilities have the right to choose employment and receive supports in their own homes and communities. Current maintenance programs and institutional living perpetuate dependency and poverty.
• Support “Community First Choice Act” in New York. As part of the federal Affordable Care Act, additional options for states are now available to move their long-term care service systems from costly, outdated institutional models to community-based models.
• Fully implement New York’s Nursing Facility Transition and Diversion Program. Nursing facility placement continues to be easier than helping someone to return home after illness or injury requiring a hospital stay. Identifying and removing barriers to effective implementation of this initiative will allow people to stay in or move back to their home.

Improve Health
• Protect choice within New York’s “managed care” approach to services. As Medicaid Redesign efforts force people with long term care needs into coordinated care organizations, we risk losing consumer-directed models of care. Having a disability does not inherently require a medical approach to service.
• Advocate against federal proposals to shrink Medicaid and Medicare programs. This “block grant” approach sets annual spending limits for states. These caps will limit access to healthcare and undermine current service levels.
• Seek opportunities to encourage balance between regulatory oversight and service. Excessive regulations and monitoring of funds can impede innovation and cost effectiveness. Access to quality care depends on adequate funding, provides flexibility for meeting complex human needs, and respects human potential.

Reduce Poverty
• Expand partnerships, transform public investments, and create demonstration projects that increase employment opportunities for all people. The recession and high unemployment rate in upstate New York creates a tough environment for youth and individuals with disabilities to earn a living wage. RCIL will continue to seek out and work with diverse partners and projects that are proving their ability to provide innovative solutions.
• Raise expectations for achievement in the new 1115 Waiver. New York’s promise of equal opportunity includes work, yet existing Medicaid Waivers do not focus on moving individuals towards real jobs. Self-sufficiency stems from competitive employment and must be a key framework in any proposed plan to truly transform service systems.

RCIL has offices conveniently located in Utica, Amsterdam, Herkimer, Watertown and Indian Lake serving 38 counties New York. We have a qualified and caring staff of nearly 1700 ready to commit to making your plan for independence a reality. If you need a service, chances are we have a relationship that will get it for you.

No longer dying at sea

Ignorance and fear of the 15th century led to practices such as the “Ship of Fools”, which launched people with severe disabilities out to sea, sometimes to their death.  “Progress” then moved us into the “The Great Confinement” of the 17th through 19th centuries where families placed people with disabilities in institutions where there was gross abuse, starvation and negligence.

Better than dying at sea, but hardly a good life.

Thankfully, the practice of segregation and abuse of individuals with disabilities slowly began to fade away in the 20th century as advocacy for civil rights became more commonplace.

By the mid-1970’s most state governments had committed to de-institutionalization, and when on June 22nd, 1999, under enforcement of the Olmstead Act, (Olmstead vs. L.C.) it was agreed that the “unjustified institutionalization of people is a form of discrimination”, individuals with disabilities were finally given the choice of a fully integrated life within their communities.

Or so we thought.

As the cost of medical services rises throughout the United States, state governments are struggling to meet the health needs and the increasing price tag of health care for their neediest residents with disabilities. New and more creative models such as the New York State 1115 Waiver, (‘People First Waiver’), a system of reform that has been developed in order to “safely, effectively and efficiently support individuals with developmental disabilities in the community by improving coordination of care across the state’s numerous service systems that support individuals with developmental disabilities.”

It’s a re-affirmation that people want to live like people – in the community and make their own choices.

The ‘People First’ project proposes that improved health care coordination can be reached through better organization of care, and that a long term care delivery system that considers individual needs, choice and satisfaction.

The system improvements through the 1115 Waiver are responsible and responsive to the changing needs of New York State consumers. These proposed modifications are community-based and are centered on an individual’s needs. They are simple to understand as well as flexible and endorse personal choice with a focus on the service needs and well-being of consumers.

People with disabilities are no longer suspended voices living in the darkness on those infamous “ships that pass in the night”. Oliver Wendell Holmes once wrote, “I find the great thing in this world is not so much where we stand, as in what direction we are moving, - we must sail sometimes with the wind, and sometimes against it - but we must sail, and not drift, nor lie at anchor.”

As we all work towards constantly moving closer to the processes that enable people with disabilities to attain their own personal freedom, we ask for your support for the ‘People First’-1115 Waiver.

It’s much better than dying at sea.

The Teen Employment Crisis and Violence Connection

A few weeks ago, in east Utica, approximately 75 youth congregated at a local intersection. They were armed with clubs, knives, and assorted other weapons. Thankfully for all involved, police arrived before a battle commenced. The youth ranged in age, with some below 16. A few of those who were older were taken into custody by the police.

Unfortunately, this was not an isolated occurrence. Local law enforcement authorities, as well as those around the country, have noted a substantial up-tick in the numbers of youth involved in street gangs in the last few years. Is there a connection with the lack of jobs available for youth in the local community as well as elsewhere in the country?

The Great Recession that began in 2007 brought the overall unemployment rate to 10 percent. In fact, according to a report in the on-line journal Spotlight on Poverty and Opportunity teen employment has declined more than 25 percent since 2006. “For teens from low income families, summer employment provides not only income, but also work experience that can distinguish teens within a competitive urban labor market and signal competence and professionalism to potential full-time employers.”

Entry level employment such as fast food, retail, landscaping, and grocery store work can provide skills that are critical to future employment. Youth learn to show up on time, listen to their boss, consider a customer and the fundamental principle of exchanging time for money. Futhermore, these early work experiences encourage school completion, create connections with other working teens, and help lower risky behaviors. RCIL’s Main Street program works to put at-risk youth on a path toward a job and/or further education. Linking high school students to occupational training with technical schools and/or community colleges has proven successful. Also noted in the Spotlight on Poverty and Opportunity, “Career Academies establish partnerships with local employers to provide work-based learning opportunities to improve student preparation for the workforce as well as college attendance. These programs have been shown to be effective for at-risk youth.”

We should advocate for substantial increases for government funding in support of these initiatives. It should be available to both young women and men who can certainly all benefit. When one looks at the huge recidivism rates for our prison system (over 40 percent), and the cost to society both financially and emotionally from crime, the cost effectiveness of such funding is clearly apparent.

- Dave L.

A Garden to Remember

Last night, 170 community leaders kicked-off RCIL’s fundraising efforts for a beautiful garden to be built outside of the Dorothy Smith Center for Advocacy on Genesee Street. Susan Matt, a dedicated community supporter, was roasted and toasted and raised thousands. The design of this space transpired from an on-going relationship with Rust to Green, a city-wide initiative launched by Cornell professor, Paula Horrigan. Once built, the outdoor living space will be enjoyed by the over 40 participants served daily in the Adult Day Services program along with the broader community.

Aging in place
Aging in place is the ability for a person, despite health-related conditions, to remain living independently in their home in the midst of their community. To achieve this goal, seniors must maintain their health physically, emotionally, cognitively, and psycho-socially. However, coordinating care and services can be difficult because the delivery system is often fragmented, and needed services may be difficult to find or not always available. The Adult Day Services program provides holistic care and allows for members of our community to be cared for, while still maintaining independence in living within their community.

Alzheimer’s gardens
Over the last decade, research has demonstrated the benefits of gardens as therapeutic for individuals with Alzheimer’s disease. It is a calming place when “sundowning” occurs – the classic wandering and agitation associated with dementias. Among the flowers and herbs we can look, hear, taste, touch, and smell and enjoy one of the few spaces that truly allows for universal access. Gardens, too, provide private space for thought and reflection and reminiscence about favorite places from earlier years.

Re-birth of a city
Already a green building with geothermal power, the addition of a frontward-facing, sustainable garden at the Dorothy Smith Center for Advocacy is part of a broader effort to revitalize Utica. As part of its mission to advance projects that improve urban livability, sustainability and resilience, Rust to Green (R2G) provided the technical experience in landscape design to both preserve the character and space of a beautiful old building into what will be a beacon beauty in a city that’s struggled to grow. Click here for more information on R2G.

Beauty. Hope. Remembrance. Let’s build a garden to remember.

For more information, contact Diana Sorrento at 797-4642.

Towards a More Livable New York

With 3.7 million individuals aged 60 and over, New York has quite a challenge in organizing its resources to care for this large and very diverse demographic. To provide some guidance, the New York Office for the Aging has created a three year plan that tries to incorporate individual and community needs with new and existing programs, opportunities and laws (e.g. Older Americans Act Core programs, Areas on Aging discretionary grants, and consumer control and choice mandates). The plan outlines many services aimed at assisting seniors and individuals with disabilities to remain in their homes with a high quality of life and to avoid unnecessary nursing home placement. Services, depending upon need, may include housekeeping, personal care, transportation, delivered meals, coordination of service, day activity and socialization.

A few highlights from the current plan:

The Livable New York Initiative is based on the idea that senior and disability friendly communities are communities that benefit everyone – not just seniors. New provisions, inside the New York State Elder Law, require mixed-use, age-integrated communities. The intent is to provide technical assistance to communities such as identifying issues, planning and working with the unique character of communities. In practical terms, this includes issues like zoning, housing, community-design models, and green-spaces to improve the “livability” of their neighborhoods.

The Naturally Occurring Retirement Community Supportive Service Program (NORC) helps residents who purchased their homes or apartments avoid moving out simply because they need assistance not currently provided in their communities. These “aging in place” programs make economic and social sense since most people prefer to maintain closeness to family and friends and only pay for services they really need. Already, New York State has 36 NORC’s established through community-partnerships and over $4 million in funding. Healthcare, housing, and peer providers work with seniors and the disabled to fill gaps left by existing service systems.

Take a look at the New York Office for Aging’s proposed plan. What do you or your family need that’s missing? What do you want when you’re aging? Are there any ideas that you think should be supported? View the plan on-line at http://www.aging.ny.gov/NYSOFA/StatePlanOnAging/Index.cfm.

You have until May 20th to have your voice heard.

Speak up for what you like. Speak out against what you don’t

- Donna

Life After High School

Yesterday, over 60 students from Proctor and Herkimer High Schools took control of their future. As part of the 2011 Youth Summit, these youth talked and learned about one of life’s scary leaps: moving on from high school.

After years of schooling, it’s hard to know where and how to get to the next step. There are questions about what the next steps should be - Enter a trade? Try for college? What skills do I need to get there? Who can help me learn those skills? What challenges are out there? Sessions throughout the day highlighted the connections between education, employment, and personal character development. Presenters offered resources on how to shake hands and look an employer in the eye, stay out of trouble, and how to transition to college.

To the students that demonstrated leadership in participating – it’s your life, and we’re confident that you can create the future you want. It’s time to start opening doors.

3 Questions to Ask When Considering Healthcare Proposals

Watch, listen, or read any news source and you’ll come across opinion and news about the healthcare debate. It’s not too surprising – after all health care is about 17.3 % of our Gross Domestic Product (GDP). It’s also approximately a quarter of the federal budget. Beyond the impressive finances – this is our health we’re speaking of.

With the complexity of our lives it’s easiest to make a gut judgment about what to think of the healthcare proposal based on two questions: 1) do I trust the source and 2) what effect will this proposal have on me and my family. We’re all busy, but we must do better. Consider the following:

1. Who takes the financial risk?
Since not everyone has the same healthcare needs and we can’t predict the future, so there is considerable financial risk for individuals. Once a situation arises, not everyone knows what the medical costs will be. A pregnancy, for example could cost $5,000 or over $1 million in the baby’s first year for complications. Consider in any proposal - who takes this risk – the individual, taxpayers, citizens, the employer, doctors? How large is the risk pool and how is it shared and who decides? When does the risk fall to the individual or collective?

2. Is the focus on limiting expenses or improving quality of life?
The World Health Organization in 1948 stated that “health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity.” However, many proposals start from a cost perspective – how can we reduce costs or keep premiums low. This approach often pits different types of cuts against each other: large and sweeping vs. small and targeted but with the same goal: control costs. A less common approach focuses on improvement to quality of life with a focus on outcomes and access – how can we ensure that children with asthma have control over breathing? Does a person have access to effective therapies to recover from an accident? These questions bring us towards solutions such as home and community based services that provide a higher quality of life. Cost savings may be also be achieved, because prevention is frequently more cost-effective.

3. Does this proposal suggest that healthcare is a right or a privilege?
Proposals generally start from one of two premises – either healthcare is a right or a privilege. On the “rights” side healthcare is a service you should be guaranteed access to regardless of means. For example, when a person entering an emergency room receives care regardless of ability to pay. Alternately, on the “privilege” side, healthcare is a service that each person should “earn” through contribution. These proposals focus on employer-based and private sector solutions where individuals can earn better healthcare by different career choices.

Once you’ve asked yourself these questions about each proposal you read, you may find that perhaps you’ve changed your mind. Proposals often contain a mix of these, but trend to one side or the other. We all may answer these questions differently – the most important one though is did we ask some in the first place.

How do you decide?

Proposed Rip in the Safety Net

A plan to change Medicare was recently proposed that would fundamentally change how future recipients may receive these federal health benefits.


As far back as 1945, Harry S. Truman outlined what he hoped would be a “comprehensive prepaid medical insurance plan for all people”. However, as time passed, the scope of this plan began to narrow. When it was learned through a national survey that only 56% of Americans 65 years of age and older had health insurance, the Social Security Act, signed 20 years later by Lyndon B. Johnson, established Medicaid, which was meant to fulfill the health care needs of low income Americans, and Medicare which became the primary channel for senior citizens and some individuals with disabilities to obtain broad health care coverage.

Medicare has been the favored “health care safety net” for most seniors since its inception 46 years ago, and thoughts of effectively changing that health care program has many seniors, and future seniors, very concerned. Under a proposed plan that is currently under consideration in Congress, those who are 55 or older would remain in the current Medicare system, those under 55 would receive subsidies that would steadily lose value over time. The ‘under-55’s’ would become part of a new Medicare program that has fixed ‘spending caps’. Any health care expenses beyond those spending caps would become the responsibility of the consumer either through the purchase of supplemental health care plans or paid for out of pocket. The revised plan suggests that starting in 2012 the Medicare program would be reworked into a system that would provide future seniors with "vouchers," direct payments to subsidize private health insurance plans rather than the current Medicare-direct payment for seniors’ medical bills. There has also been great concern over whether insurers would readily accept the majority of seniors.

The intended changes to Medicare have caused confusion and anger, primarily because many Americans worry that they may not be able to obtain future medical care for their needs. The way to fix American healthcare is not to take it away from people. Restricting access to healthcare while reducing services for the poor and the elderly are not justifiable even if they balance the Federal budget, (which they won’t.) We have to decide what kind of America we want to retain and refuse to put the health and well-being of millions of Americans at risk by the wholesale cutting of essential social programs. America’s fiscal health cannot be achieved by eroding health care.

Ordinary Power

It’s been said that people remain silent, cynical or indifferent because they don’t believe that change is possible. But when ordinary people become advocates by taking action it’s because they believe in their own power to change the future.

How important is it to be aware and to participate? Do we know our neighbors, our community? When we look, what are we really seeing? When we listen, what do we hear? In order to be effective advocates we need to know who we are, what we oppose, what we’re for; and what we intend to do about it.

At the Resource Center for Independent Living our goals are based on an Independent Living Philosophy that promotes freedom of choice for all and advocates for the rights of people with disabilities. What does that mean? In part, that we believe in the value of all people to live the lives they choose. We support community living for people with disabilities and the preservation of federal and state health care programs and services that sustain independent living. We are also committed to taking necessary steps that will eliminate poverty.

How do citizens get involved and become advocates? By transforming thinking into action and demanding that their voices be heard. As we connect with others who share the same purpose and values we recognize that advocacy is a powerful process that encourages private citizens to engage those in public life and more importantly, it is an effective tool to achieve justice.

How important is getting involved? Ordinary people have provoked extraordinary changes locally and globally, by taking their beliefs and their knowledge and committing themselves to become partners for change. One example became the Disability Rights Movement. This endeavor used focused dynamic advocacy methods; by engaging legislators, using letter writing, petitions and civil disobedience to obtain human and civil rights for people with disabilities; a fight we continue to this very day.

The common history of these advocates is one that is repeated in almost every area where there is discrimination and injustice. It’s a challenge for any group of individuals to discover who they are and what they can do to effect the meaningful changes that matter most to them. It’s an even larger challenge for them to make their common interest in justice the interest of their opponents.

So many people have grown complacent and turned off the sound on this struggle. We can re-connect to our common humanity by refusing to push vital issues out of sight or let others make decisions for us. By choosing to act rather than react we become good advocates; by acting with others, we become empowered.

If you are interested in learning more about how you can help, contact us