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.