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.