| Barrier Free Living When Disability Isn’t the Only Challenge |
 |
 |
 |
| Tuesday, 24 November 2009 15:04 | |
|
Originally launched in 1978, Barrier Free Living has covered a lot of programmatic ground to become the agency it is now. “We began as a program within FEDCAP,” explains Paul Feuerstein, the agency’s President and CEO, who has been with the organization from the very start. “They had gotten a federal grant to work with newly disabled people on the lower East Side.” Feuerstein and the agency’s small group of staff set out to engage people who were just getting out of the hospital with traumatic brain injury, amputations, spinal cord injury, etc. “The initial model was to hook people up with services, get them into vocational training programs and ultimately back into the world of work. That was the focus,” says Feuerstein. Soon, various complications began to surface.
As a result, the program began providing more and more individual counseling and other supportive services. “We were really running a mental health model,” says Feuerstein. And, the organization itself was devastated just three years later when a governmental reorganization in Washington left the program without any funding. “When the Department of Health Education and Welfare (HEW) was split into Health and Human Services (HHS) and the Department of Education (DOE), our program wound up in DOE,” explains Feuerstein. “This wasn’t their focus. They weren’t interested.” The program fought back with a demonstration at Federal Plaza. “We presented our message in English, Spanish, Chinese and Yiddish, the languages of the lower East Side,” says Feuerstein. This effort got the attention of a New Jersey-based funder who provided support to spin the project off as a separate, stand-alone nonprofit. Feuerstein became the first CEO. Finding a name was the first challenge. The program had been known within FEDCAP as Project Outward Bound. “We couldn’t use that because it conflicted with the large national group, Outward Bound,” says Feuerstein. “Besides, whenever we went to meet with potential funders, they expected us to be a wilderness survival program. My response was that living with a disability in New York City was wilderness survival.” Eventually, the group found a name in its ultimate programmatic goal -- individuals with disabilities should live in a world free of barriers. Even more challenging was the fact that Feuerstein was CEO of a brand new nonprofit with no operating funds whatsoever. “We went for seven months with no funding,” he explains. “I was a volunteer.” The group continued operating out of a storefront in a New York City Housing Authority (NYCHA) building on Avenue A. “NYCHA was very good to us. We went for seven months without paying rent.” Eventually, BFL received an initial grant from the New York Foundation and then some subsequent smaller grants. The first major breakthrough, however, came when BFL approached the New York City Department of Mental Health, Mental Retardation and Alcoholism Services with a proposal to open an Article 31 mental health clinic specifically to serve people with physical disabilities. The City hadn’t approved a new clinic in years and felt BFL was still unseasoned. “They told us to go and find somebody to mentor us,” explains Feuerstein. The City funded BFL to open a satellite clinic affiliated with University Settlement – an arrangement which lasted several years before BFL struck out on its own in 1985. “We were the first new Article 31 mental health clinic in New York City in about ten years,” says Feuerstein. “We paved the way for a whole new generation of mental health programs.” BFL would go on to run this clinic until 2000 when it was closed due to financial pressures associated with the State’s anemic clinic reimbursement model. Homeless Services However, it was lessons learned from operating the clinic that led BFL to begin providing services for the homeless with disabilities. “We began to see guys roll up to our storefront in wheelchairs saying that they had just been discharged from the hospital and had no place to go,” says Feuerstein. BFL began to see – and document – a pattern in which individuals would spend half their time in Bellevue with acute medical problems and the other half either on the streets or in City shelters where their specialized medical issues were not being addressed. “It was a very dysfunctional system,” says Feuerstein. At the time, the City had only two shelters that were nominally wheelchair accessible. In reality, physical plant issues at both limited their ability to accept – let alone appropriately serve – clients with disabilities. The only other alternative for severely disabled homeless people coming out of hospitals – placement in a nursing home – was both inappropriate for the individual and extraordinarily expensive for society. The cost of an average nursing home bed in New York City is currently estimated to run at $118,000 per year. Feuerstein and BFL approached the City with a cost effectiveness argument. “We said if they gave us $3.5 million to build a shelter, we would save the taxpayer that much money within the first 18 months of operation,” he explains. Ultimately, both the City and State bought into the premise. BFL got a property on East 2nd Street from the City and $3.5 million for specialized construction. “We had to get special permission to have people in wheelchairs above the first floor,” says Feuerstein. “We have three separate fire zones. One, with concrete slab construction, is as close to fire-proof as you can get.” Still, there were significant bumps along the way. One was a policy that individuals who couldn’t independently transfer from a wheelchair to a bed on their own weren’t appropriate for the shelter system. “We challenged that on the basis of section 504 of the Rehabilitation Services Act of 1973 that required federally-funded programs to be accessible,” says Feuerstein. “They were getting federal dollars to house the homeless. This was a violation of federal law.” Finding funds for a realistic operating budget was a bigger challenge. BFL had built its savings argument based on an assumption that all inclusive shelter costs of $100 a day were significantly better than $1,000 per day in a hospital or $350 per day in a nursing home. The City’s Human Resources Administration (HRA), however, simply stated that their maximum rate for shelters was $40 per day. After years of negotiation, BFL developed a three-part funding stream to cover its costs. First there was the base shelter rate from HRA. Second, was a program fee equal to the 30% of a resident’s SSI benefit he or she normally would be paying for housing in the community. Third, and finally, was the provision of Medicaid-reimbursed personal care attendants. “A basic criteria for admission is that the person need a personal care attendant,” says Feuerstein. “So, all of our residents are entitled to that service.” BFL manages this part of its operation through an arrangement with Independence Care Systems, a nonprofit that runs a nursing home diversion program. “This enables us to have home attendants and supervisors on site 24 hours a day, 7 days a week,” says Feuerstein. “It is a service that is worth about $700,000 a year. It is what makes this program possible. We wouldn’t be able to run the program without it.” This model has allowed BFL to serve a population with needs far beyond those of even typical shelter residents. “We have served people who literally were paralyzed from the neck down,” says Feuerstein. “We have kept them medically stable and have successfully found them permanent housing in the community. We work with very severely disabled people.” Unlike typical shelters, BFL provides a range of Occupational Therapy (OT) services. “We have a very active Occupational Therapy program here,” says Feuerstein. “We have self funded an Occupational Therapist for five hours a week, which in turn allows us to have full–time students. We have relationships with over a dozen graduate schools. They evaluate every person who comes into the program to assess their skill levels and then works with them to increase those skills. Do you know how to travel? Can you get on city bus and go from point A to point B? Do you know how to manage your money? Can you manage your care attendant? Do you know how to hop and cook? These are skills our residents will need to successfully live in the community.” While BFL has cobbled together an extraordinary range of services, it faces all the same challenges as other City-funded homeless shelters – and then some. “Affordable housing is an issue for everyone serving the homeless,” says Feuerstein. “Our challenge is finding permanent housing that is both affordable and accessible.” BFL itself had been a driving force in the advocacy effort to pass Local Law 58 which required new construction and major renovations to be handicapped accessible. “I was the first chair of the New York City Coalition on Housing for People with Disabilities,” says Feuerstein. “That coalition advocated for Local Law 58. When it was passed, it was the most progressive building code in the country.” While the code has had some impact, he explains, there are escape clauses which have allowed the Mayor’s office to grant exemptions for a variety of projects. Further complicating the problem in recent years was the City’s Housing Stability Plus rental subsidy program which was only available for shelter residents eligible for Public Assistance. “Our residents weren’t eligible because they are on SSI,” says Feuerstein. “If we couldn’t get them into a supportive housing program, they couldn’t go anywhere.” Despite these added barriers to success, BFL was being held by DHS to the same standards for placement of residents into permanent housing as other shelters. The result was financial penalties based on DHS’ performance based contracts. “We were placing 20-30 people a year in permanent housing. Anyone who knew the world of disabilities services thought that was amazing, but it wasn’t good enough for DHS,” says Feuerstein. “We were able to provide DHS with enough data on the problem to have our goal lowered to 48 placements a year.” More recently, the City’s move away from HSP and new levels of cooperation with DHS’s housing staff for BFL’s severely disabled residents has led to a significant upturn in the numbers being placed in permanent housing. This year’s goal is 48, which Feuerstein is confident that BFL will meet or exceed. Feuerstein is also proud of the job BFL does to prepare its clients for continued success in the community. “The recidivism rate at Barrier Free Living is very low,” he says. “When we place someone in the community, they almost never come back.’ Homeless Street Outreach One homeless services program instituted by BFL almost 20 years ago is now on the verge of being homeless itself. Barrier Free Living’s Outreach Team, which has served homeless individuals with severe disabilities since 1990, is a victim of the City’s restructuring of its homeless outreach services and will be forced to close next July unless a new source of funding can be found. (See sidebar at left.) Domestic Violence Barrier Free Living’s focus on serving domestic violence victims with disabilities began with a single, almost random, comment during an employee interview in the mid 1980s. “A woman named Liz told us that she had 13 years of experience working with disabled victims of domestic violence,” explains Feuerstein. “I was surprised because I didn’t believe we had any in our program.” BFL quickly learned otherwise. “She began teaching us the right questions to ask,” says Feuerstein. “The women weren’t talking about it because we weren’t asking about it.” It is now widely recognized that domestic abuse is a particularly serious and widespread problem among people with disabilities. Research shows that upwards of 85% of people with disabilities are abused at one time or another. “A nationwide survey found that domestic abuse is the number one issue for women with a disability,” says Feuerstein. “A disabled child is more than four times more likely to be abused than an able bodied child.” Particularly problematic is the fact that abusers are often the victim’s primary caretaker, making it all the more difficult for victims to seek help and find safety. BFL began a program for DV victims which operated out of its clinic. “Often, victims are depressed, anxious or suffering from Post Traumatic Stress Disorder (PTSD),” says Feuerstein. “It was a way of providing some services.” In the late 1990s, New York City restructured its DV service network to include non-residential programs with one citywide contract set aside for serving individuals with disabilities. “We really had no competition,” says Feuerstein. “We had been doing this since 1986.” Today, BFL’s “Secret Garden” nonresidential DV program works with over 200 victims at a time from its base at an undisclosed location on the Lower East Side. “We get calls through our own hotline and referrals from the national domestic violence hotline, Safe Horizon, hospitals, schools, churches and word of mouth,” says Program Director Georgette Delinois. The program also has a regular staff presence at the Family Justice Centers in Brooklyn and Queens. Secret Garden’s 12-person staff helps DV victims develop safety plans, find housing and navigate the court process. The program mixes standard DV practice with customized approaches to meet the special needs of disabled victims. For example, victims are encouraged to seek court orders of protection, which will allow a police escort back into their home to retrieve durable medical equipment like hospital beds or lifts. “We have both American Sign Language interpreters and Certified Deaf Interpreters for deaf clients who never learned ASL,” says Feuerstein. “This is a program where people can get all their needs met,” says Delinois. “Other programs may address the domestic violence but will have to send them someplace else to address their physical and medical needs.” Secret Garden was recently honored with the 2009 Mary Byron Project “Celebrating Solutions” Award. Freedom House Nonresidential domestic violence services can only go so far, however. “At one point, we were able to document that 75 percent of the calls to our Secret Garden hotline were looking for shelter,” says Feuerstein. Once again, while the City operated a network of emergency DV shelters, none were accessible or appropriate for victims with disabilities. “We took our data to the City and made a proposal,” says Feuerstein. The result is Freedom House, a 95-bed emergency domestic violence shelter which opened in 2006. Freedom House can accommodate victims and their families with a wide range of physical and/or emotional disabilities. Building a facility with these capabilities wasn’t easy. “We applied to the Homeless Housing Assistance Program (HHAP) four times,” says Feuerstein. Finally, BFL got approval for a $8.3 million grant. “It was the largest grant in the 30 year history of the program,” says Feuerstein. One important design feature has been an ability to create flexible unit sizes – ranging from studio to three- or even four-bedroom apartments -- by connecting studio units with kitchen/bath facilities to adjoining bedroom units. “We call it the Holiday Inn model of DV shelters,” says Feuerstein. The economies of scale which come with Freedom House’s large size allow it to provide staffing appropriate to the population it serves. “We have a nurse, a psychiatrist for eight hours a week and a child psychiatrist for four hours a week,” says Feuerstein. Like all of BFL’s programs there is an active Occupational Therapy program to help residents prepare for independent living. Unfortunately, however, the chances of preparing domestic violence survivors with severe disabilities to find housing and live on their own within the 135-day time limit imposed by the State’s emergency DV shelter model are pretty slim, says Feuerstein. “We think it should be at least six months,” he explains. Looking Ahead One potential solution to this problem is BFL’s plans to develop supportive housing for families that have a disabled head of household. “We have been approved for 50 units,” says Feuerstein. “We are looking for a site that would accommodate 75,000 square feet for apartments plus common areas and program space.” BFL is also exploring opportunities to share its unique experience and expertise with other providers. “We have one of the largest DV programs for people with disabilities in the country and one of the oldest,” says Feuerstein. “We come with a perspective that is a lot deeper than some of the groups that have been funded to do training around the country.” BFL has started a free monthly newsletter, “Breaking Barriers in Domestic Violence.” Each issue touches on one facet of BFL’s work with people with disabilities. Anyone can sign up for the newsletter and see prior issues by going to www.bflnyc.org.
Add this page to your favorite Social Bookmarking websites           |
There are many local nonprofits that serve individuals with disabilities; many more that serve the homeless or victims of domestic violence. Yet, only one – Barrier Free Living – reaches across these programmatic divides to serve individuals who have disabilities and are homeless or escaping domestic abuse. 
Barrier Free Living runs the only transitional housing program within the NYC shelter system for homeless individuals with severe physical disabilities. Similarly, the agency’s Freedom House is the sole emergency domestic violence shelter for women or families with disabilities. It also operates a citywide non-residential DV program for the same population and a street outreach project for homeless individuals with disabilities. And, while Barrier Free Living has focused its programming on these previously un-served populations, the agency has also been a powerful advocacy voice on behalf of all people with disabilities – particularly in the areas of access and housing. 
It quickly became clear that the original “quick fix” model of vocational training and job placement was inadequate to meet the needs of people facing a lifetime of severe physical disabilities for the very first time. “People were going through a grieving process,” explains Feuerstein. “There was anxiety and depression. There were some heavy feelings about becoming disabled. They needed time to adjust and their families needed time to adjust.”
Comments