Giving back

When Rhondisa Cotton, RCIL’s program assistant in Administration, was first offered the opportunity to apply to work at RCIL, she was hesitant. She remembered, “I said, ‘no, I can’t work here, I don’t know nothing. I only got my high school diploma, my GED. You have to know something to work here.’” However, ready to confront the next hurdle, Cotton applied for the opening. “I knew this place would open up some doors for me,” she explained.

The mother of a young son and pregnant, she had come to the agency, as “a last resort. I was frustrated with all these agencies. What made RCIL different,” she added, “was that they heard me.” In particular, Cotton said she remembered the autonomy she had in deciding what services she wanted. “Miss Gail Perry sat down with me and asked me what I needed and what kind of plan I wanted. Then she said, ‘ok, now we can see how we can make this happen.’”

In the job interview a few days later, Cotton told her interviewers, “I like your agency, I like what it does. I’d like to give back.” She got the job, and started that next Monday in 2007 as a program assistant. Her responsibilities, though, Cotton said, extend far beyond the limits of her job description. “I’m all over the place. If they need me, I’m there.”

She said that sometimes, she’ll talk to consumers who come in or help out with youth programs or advocacy work. Colorful drawings plastered to the walls of her office remind her of the young friends she’s made. And around RCIL, Cotton says her bright smile is a way of saying thanks to all the other employees also working to make a difference.

Last year, she graduated with an associate’s degree in Human and Community Services and is working on her bachelor's degree. Making use of RCIL advisement and programs, Cotton bought a car several years ago and is on track to own her home in seven months. Cotton left me with her advice for potential consumers.  “Tell them that change is scary,” she urged. “It’s hard. But we know that at RCIL and we’ll help you through it.” 

- Katie J. 

A conscientious federal spending plan?

Legislators left the Capitol for Easter break and advocates for the poor are still reeling as a House of Representatives Budget Resolution tears apart social safety-net programs and creates new tax benefits for the wealthy.

Led by Paul Ryan, the House of Representatives approved the spending budget for 2014 and beyond, setting limits to what the federal government’s contribution to domestic programs would be by “block-granting” set funding amounts to states.  This is troublesome because it means the loss of states’ ability to meet actual need for healthcare, housing, employment, and food assistance - especially at a time when the economy is still trying to recover and millions are still out of work.

Ryan’s proposal makes even steeper cuts to domestic programs (than what is called for) in the Budget Control Act of 2011.  This would require deep automatic cuts to programs beginning in 2013 if an alternative proposal is not agreed upon by President Obama and Congress.   What’s even more troubling about the House proposal is it creates new lower tax brackets for the super-rich and slashes corporate tax rates for companies.  The Coalition on Human Needs is projecting automatic spending reductions will cut many low-income programs by 20% or more, including  job training, WIC, housing, and more. 

The House Budget Resolution would also repeal the Affordable Care Act meaning an additional 30 million people uninsured.  By 2050, the federal government would almost entirely be out of the social safety-net business aside from Social Security, defense, and some healthcare.

The Center on Budget and Policy Priorities recently likened Paul Ryan’s approach to conservative Grover Norquist’s vision in an interview on NPR where he related, “I don’t want to abolish government.  I simply want to reduce it to the size where I can drag it into the bathroom and drown it in the bathtub.”  The vision for a limited government does not take into consideration the impact of what suddenly pulling the rug out from under millions of Americans – now, and in the long-term will do.  Many experts have acknowledged what is needed is a balanced approach to recovery, including revenue increases, so millions of Americans can continue receiving assistance as the economy struggles to recover. 

President Obama has also put forth a spending plan to achieve deficit reduction over many years, acknowledging the important role safety-net programs play in recovery and people’s day-to-day lives.  If no agreement is reached with Congress, the automatic cuts would go into effect in FY 2013 and by conservative estimates:

·        75,000 children would not be able to receive Head Start services
·        25,000 children could not receive child care assistance
·        17,000 seniors would no longer receive Meals on Wheels
·        12,200 people couldn’t get vital AIDS drugs
·        460,000 special education students would receive fewer or no services
·        1.3 million college students would lose or face reductions in their supplemental education
grants
·        734,000 households would no longer receive help paying for their home heating or air conditioning

It is imperative that we work with our own congressional leaders and urge them to adopt a proposal that does not hurt those things we care deeply about.  America’s social safety-net is a critical component of our economy and its programs are a part of how we all live.  Without federal assistance and guidance, states will be more likely to end critical programs or reduce them to such a level that millions will remain (or become) homeless, hungry, unemployed, and sick. 

We can do much better than the Ryan plan to gradually reduce our deficit through a plan acknowledging the important role the federal government continues to play in stabilizing the economy  - and assuring all children and all families have a bright future. 

The Ryan message is not representative of who we are and what we want to be as a nation.

Congressman Hanna visits RCIL and the Earned Income Tax Credit Program

Congressman Richard Hanna (NY-24) visited RCIL's Volunteer Income Tax Assistance (VITA) Program on Saturday, March 24, 2012 at 1607 Genesee Street, Utica.  This gave Congressman Hanna the opportunity to speak with various members of the Mohawk Valley Asset Building Coalition (MVABC), officials from IRS, taxpayers and learn more about the VITA Program.

The MVABC was developed in partnership with RCIL, Cornell Cooperative Extension of Oneida County and Internal Revenue Service with financial support from the United Way of the Valley and Greater Utica Area, Inc.

 Our mission is to:  Increase awareness and utilization of the Earned Income Tax Credit (EITC); increase the availability and accessibility of free tax preparation assistance and e-filing opportunities through Volunteer Income Tax Assistance (VITA) sites; and link EITC participants to information, education, and services to improve financial literacy, and management skills designed to build long-term financial security. 

Millions of dollars had gone unreported each year for Earned Income Tax Credit (EITC) and now through the VITA program, the opportunity exists to assist taxpayers in claiming these credits. 

The over 35 certified volunteers who provide free tax preparation services at RCIL’s Supersite are college students, community members and retirees.  The EITC Program qualifications specifically target low to moderate income individuals and families living in Oneida and Herkimer Counties, with a household income of $50,000 or less.

In 2010-2011, the VITA sites brought $4.1 million of refunds into the community and $1.4 million dollars in earned income tax credits.  A total of 2,984 taxes were prepared.

We are currently reporting 1,205 tax returns prepared (not including AARP’s numbers) with a total of $2 million in refunds.  This number will increase to meet our community goals by the end of this filing season.

Our Volunteer Income Tax Assistance sites are:  RCIL (Utica), Mohawk Valley Community Action Agency (Utica, Ilion, Rome) AARP (in various locations in our area) and Mohawk Valley Perinatal Network.  Financial Literacy classes are available to taxpayers through Cornell Cooperative Extension. 

If you qualify for EITC and have not filed your tax return, please call 315.272.1888 to schedule an appointment for free tax preparation.  We will be filing returns through Tuesday, April 17, 2012.

What does it take to end discrimination?

RCIL provided testimony last week at the State Budget Hearing held in Utica by Assemblyman Anthony Brindisi on Governor Cuomo’s proposed 2012 Budget. With an emphasis on reducing spending through Medicaid and other reforms, we focused on how legislation called the Integrated Services Bill,  could save the state approximately 3.4 billion by shifting individuals with disabilities from institutional settings to community-based life.  According to Donna Gillette, Policy Analyst at RCIL, “New York is still out of compliance with the Americans with Disabilities Act that directs states to provide services in the least restrictive or most integrated setting appropriate to meet people’s needs.” The current Medicaid program still funds failed, outdated programs for individuals with disabilities in institutional settings.  The Medicaid Redesign Team created by Governor Cuomo has failed to require these practices to end.

RCIL has proposed the use of the Integrated Services Bill as the perfect tool for the state to implement the Supreme Court's Olmstead decision in New York and highlighted by Governor Cuomo in his State of the State address earlier this year. The Olmstead Decision was a landmark case that directed states to serve individuals with disabilities in ways that did not unnecessarily segregate them or institutionalize them. The Integrated Services Bill previously passed in the state’s Senate and Assembly, yet Governor Paterson vetoed the bill in 2008 because he believed a state council that was already working on these issues would propose their own legislation or action.  The Council, called the Most Integrated Setting Coordinating Council (MISCC), has failed to demonstrate true reform reiterating the need for the legislature and the Governor to pass the Bill now.

Assemblyman Brindisi has agreed to work with RCIL and the legislature to build support for the Bill in 2012 so that it will be reintroduced and sent to Governor Cuomo to be signed.  As Medicaid Reform in New York State moves disability populations to managed care, it is essential that we protect consumer-directed models of care within the new structure.  Without having legislation that gives people the choice of where to receive services and presumes that everyone can benefit from community life, segregation will continue.  This bill will provide the framework that is vital in assuring that providers who benefit from keeping people segregated, can no longer do so.  Recent investigative reporting in the New York Times has shown the rampant abuse and death of individuals with cognitive disabilities residing in institutional settings across the state.  There are 135,000 New Yorkers with developmental disabilities currently being served through the Office for People with Developmental Disabilities, many of whom could and should be living in their own apartments or homes in the community.

The Integrated Services Bill would finally give people the choice they’ve never had to direct their lives and their futures. Without it, the equality we’ve been fighting for will remain elusive.  For more information on the bill and how to get involved in transforming the way government does business, contact Donna Gillette at extension 2981.

Assemblyman Marc Butler visits RCIL

Resource Center for Independent Living hosts community forum in Herkimer

Assemblyman Marc Butler recently met with individuals and their families who receive services at RCIL’s Herkimer Office on East German Street to discuss challenges faced by people with disabilities in daily living and in the current economic environment.

The conference room was full on February 23, 2012 with a group invited to dialogue about issues such as employment, housing, transportation, and education. One of the central topics covered in the forum were the difficulties faced when a youth or adult has multiple problems not easily categorized for services. Serving the whole person in this situation may require a team approach including RCIL staff, medical providers, social workers, guidance counselors, teachers, and/or family members and a collaborative approach from local agencies assisting individuals.


Assemblyman Butler listened intently to the comments made and explained some of the budgetary changes being enacted by the current governor and legislature possibly affecting the availability of services for persons with disabilities.  The information included the new 2% property tax cap, the legislative budget process with its complexity of formulas, and the history of the Medicaid program, compared from its original design from 1960 to today.


RCIL will be following up with attendees requesting assistance and those who expressed an interest in serving on the Herkimer RCIL Advisory Board. This board reviews current practices and helps plan future programming and initiatives.

The Resource Center for Independent Living (RCIL) believes that everyone one of us is entitled to maintain our basic human dignity. We support your right to have individualized services that you direct. Dignity begins with having a choice – and then choosing what’s best for you. Call RCIL in Herkimer at 866-7245 or Utica at 797-4642.

Catering with purpose

“You can tell I don’t sit down much,” Debra Richardson, Program Director at Leaf, Loaf & Ladle noted with a sheepish grin as she gestured toward her makeshift desk in a corner of the kitchen space. However, Richardson didn’t seem to mind the hustle and bustle; her work is a realization of her vision to revitalize lives through food.  And, she added, “My work is what I’m passionate about.” 

Leaf, Loaf & Ladle is a catering service and social enterprise of RCIL, based out of the kitchens in the Dorothy Smith Center for Advocacy in Utica. Along with Richardson, who provides the oversight and organization for the business, Chef Mike Capelli heads up the culinary aspect, filling out the two person show.  As well as regularly catering meetings, weddings and other events by request, Leaf, Loaf & Ladle also prepares and serves meals to the participants of RCIL’s Adult Day Service Program, focusing on a fresh, healthy whole foods menu. “If we’re having potatoes,” Richardson avowed, “we’re not going to open up a can.”

The origins of Leaf, Loaf & Ladle were a culmination of Richardson’s past work in food services and her commitment to reach out to her community. In 2005, Richardson said, the pieces of her life had started to come together; she had a steady job with Hotel Utica, “Everything was going right,” she recalled, “but I just wasn’t happy. I needed to get in touch with food.” That same year, Richardson heard about the Farestart program in Seattle, Washington, a catering service that served as a job training program with a focus on making and serving healthy, high quality meals. She began working with the Kitchens with Missions folks in Seattle and in 2008, everything fell into place as Richardson was able to partner with RCIL to apply the same goals in Utica. Especially with the growing demand to eat locally and prevent diet-related diseases such as diabetes, heart disease and obesity, she said, “there’s such a need.”

The business is constantly adapting to fit the available niche and to most efficiently utilize its resources for good. For instance, previously Leaf, Loaf & Ladle has offered a work-preparedness and job training program for those joining the work force or reentering society. However, after 2008 market crash and the resulting unemployment, federal funding for job training was cut as there were so few jobs to fill nationwide. Currently, the enterprise continues to provide similar training, but for those who volunteer their time, often to fulfill court-ordered community service hours or rehabilitation requirements.

Richardson told the story of “James,” a young autistic man who volunteers twice a week at Leaf, Loaf & Ladle in order to gain work experience and independence. That week he had been in charge of portioning meat for a catered meal and peeling potatoes. “We love having him. Both of us are benefitting from the arrangement,” Richardson enthused. More generally, she noted the flexibility of the work Leaf, Loaf & Ladle offers; “There’s a place for everyone in food service.” Usually, about three volunteers fill the kitchen each day, though former volunteers are hired to help with the frequent catering events.

However, even as the mission of Leaf, Loaf & Ladle expands or alters with the uncertainties of the future, the underlying focus will stay the same. A constant theme, Richardson has noticed, is that “People can recover by giving back.” And the most rewarding aspect for both her and the volunteers is, and will continue to be the learning process and the resulting sense of accomplishment: “Knowing that the food they’re cooking is being served to 50 people right upstairs. And,” she added, “I get to be able to see people reconnect their lives through the vehicle of food.”

Working again

When first diagnosed with a disability, Cliff Franklin, now employed in the advocacy division of RCIL, was told that in order to keep his government funding, he couldn’t ever get a job. “After being active my whole life, I couldn’t bear to hear that I couldn’t work again,” he said. That misleading message, he continued, was what motivates him to advocate so strongly for his consumers today.

“You probably haven’t gotten a clear definition of what we do in here the advocacy department,” he smiled wryly. I don’t know if a clear definition exists.” Day to day, Franklin works to help ensure the system’s integrity, so that those involved understand their options and can receive the services they have access to. For instance, when assisting people to find affordable housing, he advises that they take photos of any disrepair to ensure that the landlord doesn’t falsely accuse them of causing damage.

Franklin’s particularly dedicated to helping consumers navigate the system of social security, disability benefits, or the government programs available to help save money or receive help for substance abuse.That process involves conversations with consumers, many phone calls and inevitably, hours that extend past closing time on Friday night. To teach them, Franklin noted, “I take them by the hand and walk them through the process.” But Franklin can fully relate to the frustrations faced by consumers. 

“I had to go through those things myself,” he said. “I spent time in law libraries and talking to people, knocking my head against the wall” before figuring out all the paperwork. After being referred by someone to RCIL in 2005, he was hired as an employment specialist and has worked at the agency ever since. “As for advocacy, we’re all insane here,” he joked. “Every day’s a learning experience and something new pops up.”

However, despite long hours and challenging negotiations with the at-times-inefficient bureaucracy of government agencies, Franklin maintains his allegiance to the consumer; teaching them to advocate for their own rights and to take advantage of the opportunities available to them.  He said, “There’s the old saying, ‘When one door closes, another opens.’ Sometimes people just need help seeing the open door.”

- Katie J. 

Mentors they never had

Clad in a black sweatshirt and baggy khaki pants, Willie Rodriguez lounged comfortably in his swivel chair in his office at RCIL’s Main Street Program. However, as mentor of 75 at-risk 14-21 year olds, Rodriguez’s persona of laidback geniality acts as a necessity as well as a tool.

The responsibilities of the job are varied, but in short, when a kid’s life is crumbling around him—whether due to crime, family issues, abuse, or lack of stability at home- Rodriguez is the puzzle piece that holds it all together. He attends court cases, works with school administration and faculty, counsels parents and family members and of course, serves as an advisor, friend, and confidant to “his kids.”

The program was started by Rodriguez in collaboration with Director of Advocacy Services, Gene Hughes in 2006 while during previous company retreats, RCIL staff noted that a whole subset of the population –“youth in the juvenile justice system, the criminal justice system, on the streets- wasn’t being served.”

Receiving funding from the United Way, the 38-year-old father of six got the program underway, offering mentoring to teens and young adults from Utica and the surrounding communities. The Main Street program is free of charge for participants, which Rodriguez lauds as key to pushing for the best interest of the youth. He grins mischievously as he tells stories about confronting stubborn judges. “I can advocate for a kid, without jeopardizing my funding,” he noted.

Upon referral to the program, each youth is evaluated to determine the needs that should be met, and assigned to Level 1-3. Depending on the individual and his or her circumstances, he will talk with Rodriguez every day, either in person or by text message, or a few times a month. Currently, he and Kim Walsh, who joined the program last year, together work with 125 at-risk youths, with plans to serve at least 25 per year.

Both explicitly and through his body language, Rodriguez emphasized his casual approach to interacting with kids. “I probably hear more than a (hired) therapist will ever hear,” he said. “We have the time to build up that rapport. We talk about”-he shrugged- “sports, personal life, whatever.”

Perhaps most impressive are Main Street’s results; since the program started, there has been only one re-offender (1%) compared to the statewide juvenile recidivism rate of 85%. Whether using RCIL’s allocated funds to provide a youth a gym membership as a way to stay off the streets, offering housing advice to those looking to live on their own, or simply availing himself as a listening ear, Rodriguez can serve as the father figure and mentor that many of these kids have never had.

“It’s easy to tell a kid what to do, but without providing (the means), words are just words,” he explained. “You have to walk them down that road.”

- Katie J. 

New York Medicaid Redesign Team Efforts Fall Short

On December 13, 2011, the Medicaid Redesign Team met to hear remaining workgroup recommendations for a full report that is due to Governor Cuomo on December 31.  Advocates remain skeptical that the redesign process can reduce overall spending on long-term care without jeopardizing access to community-based services for individuals with disabilities.  Individuals with disabilities are entitled to receive health, employment, and education services and supports in an integrated setting appropriate to their needs according to Title II of the Americans with Disabilities Act.  Typically, people prefer their own home, yet New York State has developed a Medicaid funding priority that favors institutional settings.  Neither the Governor nor Medicaid Redesign Team members have directed legislative action that is necessary to correct this situation. 

The Medicaid Redesign Team was created by Governor Cuomo earlier in the year to develop strategies to bring the Program’s spending to more sustainable levels and to improve patient health outcomes.  Many reform recommendations  are already being implemented across the state under a global spending cap set in the state’s 2011-2012 budget process.  Previous cuts to homecare providers of 2% this past year, also threaten access to long-term care services for individuals with disabilities as agencies struggle to meet the needs of patients and workers.  Some highlights of the Medicaid Redesign workgroups and their recommendations to date include:

·        Program Streamlining – creation of a state insurance exchange, centralize eligibility and enrollment, establish asset verification system, and phase-out local share of Medicaid responsibility

·         Behavioral Health – will transition slowly to managed care, increase use of health information technology, create of specialty behavioral managed care organizations, and payment incentives based on health outcomes

·         Managed Long-term Care Implementation and Waiver  – principals have been developed for a new care coordination model, development of statewide quality measures  to reduce admissions

·         Health Disparities – establishment of data collection standards and improving access to language services

·         Basic Benefit Package – align state coverage to federal grading mechanisms and eliminate non-evidence-based benefits

·         Workforce Flexibility/Scope of Practice – promote the consumer directed personal assistance program and define the scope of practice for healthcare professionals

·         Payment Reform and Quality Measurement  – Integrate Medicaid and Medicare service delivery and financing for dual eligibles, adopt state-wide performance measures

·         Affordable Housing – new investments in affordable housing, creation of a formal mechanism to direct savings from redesign to housing, stream-lining of assisted living to improve access, a de-linking of nursing home bed reduction with the creation of assisted living beds.

-          Donna G.

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.