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.