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 Rockland Independent Living Center (RILC) has been breaking down barriers for 25 years. As one of over 30 Independent Living Centers (ILCs) in New York State – and hundreds more across the country – RILC is part of a movement whose goal is to ensure that individuals with disabilities are able to enjoy full and productive lives, thoroughly integrated into the mainstream of American society.
Sidebar: "Keep the Carts"
ILCs are an outgrowth of the Rehabilitation Act of 1973, sometimes called the Civil Rights Act for the Disabled, which prohibited discrimination against disabled persons in programs, services and benefits that are federally funded.
ILCs all share certain key characteristics. They are community-based, non-residential nonprofits which are consumer controlled. They are run for people with disabilities, by people with disabilities. By law, at least 51% of an ILC’s staff and board must be comprised of individuals with disabilities. 
Board President Audrey Rosenfield is a case in point. “I started as a consumer looking for help,” she explains. Newly disabled by a car accident in the 1990s, Rosenfield was struggling to find her way both practically and emotionally. “I needed to know what to do. I didn’t know anything about getting the equipment I needed or arranging for help at home. Suddenly I was not able to walk and I could no longer work. I needed to belong someplace and I needed to find a new future. RILC gave me everything I needed.” Before long, Rosenfield was working as a volunteer helping out other individuals with disabilities. Later she joined the Board and is now serving her third year as President.
Another unique aspect of ILCs is that they operate across a full range of disabilities – physical, mental, behavioral and developmental. This broader perspective is refreshing for George Hoehmann, who joined RILC as Executive Director last year after a long career working primarily in more narrowly-defined residential programs for individuals with developmental disabilities or youth in foster care transitioning to OPWDD services.
“We work for and with people who have any type of disability,” says Hoehmann, noting that people in each of these various disability group categories often share similar challenges in accessing opportunities for housing, employment, education, recreation and community involvement.
This cross-disability mandate also allows RILC to serve individuals who may not automatically fall into eligibility categories for other traditional service programs for people with mental, behavioral or developmental disabilities.
“RILC’s mission is to break down barriers – whether architectural or attitudinal – for people with disabilities,” says Hoehmann. Much of this work is carried out through the core services provided by all ILCs: peer counseling, independent living skills, information and referral services, and advocacy.
Systemic Advocacy
RILC advocates on behalf of individuals with disabilities in two ways. Sometimes, advocacy is done one-on-one, helping individual consumers navigate complex rules and bureaucracy to obtain necessary benefits and services. ILCs, however, also have a fundamental mandate to advocate for systemic changes that may improve access for specific groups or even the entire community of individuals with disabilities at the same time.
Generalized disability awareness campaigns help the community at large understand that there are substantial numbers of people with disabilities living in their midst – and that they face significant challenges in being able to live full and productive lives.
“There are approximately 300,000 people living in Rockland County and it is estimated that as many as 30-40,000 may have one type of disability or another,” says Hoehmann.
RILC’s general disabilities awareness campaigns include an annual “Birthday Party” for the Americans with Disabilities Act (ADA), which garners significant local media coverage, to highlight the critical benefits provided by this historic piece of legislation. “We had about 120 people here in our offices,” says Hoehmann of the most recent celebration. “We presented a series of awards to key supporters, including County Legislator Bob Jackson.” Similarly, RILC has joined with other local provider groups to make annual Disability Awareness Day presentations at local high schools and middle schools.
Just last month, RILC launched its own radio program on AM 1300 Radio Rockland. “We’ll be on the first Monday of every month from 10:10 to 10:40 a.m. and can be heard on the internet at www.wrcr.com,” says Hoehmann. “It gives us a chance to get our name and mission out there. In addition to the show itself, we get a promotional mention about 35 times a week.” RILC’s first broadcast featured Diane Adele Pomeroy, one of the New York State Senior and Disability Advocates of the Year in 2011. Anticipated future topics include a discussion about Consumer Directed Personal Assistance Services (CDPAS) programs lead by Brian O’Malley, Executive Director of CDPAANYS.
RILC also works closely with local governments to address accessibility issues and other matters of concern for people with disabilities. With several towns and villages involved in revitalization efforts, RILC makes sure that accessibility is on the agenda. The agency has been successful in ensuring that curb cuts for wheel chair access and traffic light audio annunciators for people with visual impairments are installed where appropriate.
In another recent initiative, RILC began providing outreach and training for local police departments on communication challenges when dealing with individuals who are deaf or suffer from serious hearing impairments. “It is difficult when police officers interact with people who are hearing impaired,” says Hoehmann. “It can be a stressful time. The police may not understand that the individual is unresponsive to instructions or commands because they cannot hear them.” To address the issue, Nancy Housner, Deaf and Hard of Hearing Advocates, of the RILC staff developed a series of communication cards that both police and consumers can use to communicate. One laminated visor card says simply “Driver is Hard of Hearing: Failure to Cooperate with Verbal Commands Means I Am Not Hearing You!” Another includes a series of pictures which police officers can use to communicate with hearing impaired motorists – requesting their driver’s license or registration, explaining that they ran a red light or passed a stop sign, or inquiring if they need help.
Another interesting example of RILC’s broad-based advocacy work came last year, when it was able to reverse a decision by the management of Palisades Center Mall that would have eliminated motorized carts for use by people with disabilities. (See “Keep the Carts!” on the next page.)
Since his arrival, Hoehmann has been aggressive in ramping up these broad-based advocacy efforts. As a result of these efforts, RILC’s most recent annual report for the year ending September 30, 2011 was able to report a total of ten “System Changes”, reflecting “lasting changes in attitude or policy with a significant local impact for people with disabilities”. “This is the most we’ve ever been able to report,” says Hoehmann. “It’s more than twice what we’ve done in any prior year.”
Independent Living Services
RILC provides a full range of direct one-on-one services designed to assist individuals with disabilities live the lives they want to live in the community. “We provide training in the areas of personal care, self-advocacy, financial self-management, social activity planning, household management; as well as other areas necessary for community living and participation in community activities,” says Sarah Mitchell-Weed, Independent Living Services Director.
RILC’s Benefit Advisement services help consumers in understanding and accessing resources such as Social Security Disability (SSDI) and Supplemental Security Income (SSI), the Social Security Work Incentive Program, Medicare & Medicaid, Public Assistance & Food Stamps, Emergency Food Sources and Cash.
“We help consumers understand what resources may be available to them, and assist them in making informed choices,” says Hoehmann. RILC staff will do a preliminary screening for eligibility and assist consumers in preparing and submitting applications, as well as dealing with hearings and appeals. “When necessary, our staff will go to the Social Security Administration and other government offices to assist consumers in navigating the system,” says Hoehmann.
RILC also can certify consumer eligibility for TRIPS, a curbside-to-curbside shared-ride para-transit bus service for Rockland County residents who are physically or mentally disabled or senior citizens over the age of 60 who find it difficult or impossible to use fixed- route bus service.
PACER
One of RILC’s most important services – and one which has come to represent the largest portion of its overall budget – is PACER: Personal Assistance Consumer Employer of Rockland.
“We provide assistance to consumers to find, train and manage their own home health attendants,” says Hoehmann. “It sounds like a traditional home care program, but it is not. There is a strong element of consumer empowerment.”
RILC serves over 200 consumers in the program. Consumers are evaluated for eligibility and service needs by the Rockland County Department of Social Services and are given a choice of several local CDPAP providers. “We do a one-on-one training on how consumers can select, supervise and guide their personal assistant in providing the care they need,” says Joel Taveras, RILC’s PACER Director. Consumers can recruit personal assistants from friends, neighbors or family members other than a spouse or parent. Or, RICL can provide referrals from a list of personal assistants which it maintains on file.
Duties range from basic housekeeping tasks to personal hygiene activities and assistance with medication, catheters and other medical equipment. “A plan of care developed by DSS will show what needs to be done,” says Carlos Martinez, Assistant PACER Director. “If a person has special needs or particular disabilities, we may recommend that they have a consumer representative who can help in training and supervising the personal assistant.”
RILC serves as the financial intermediary, handling the personal assistant payroll process and collection of reimbursement through Medicaid. RILC will also assist consumers in obtaining back-up services on either a planned or emergency basis if their own personal assistants take vacation or call-in sick.
Jobs and Housing
Finding accessible, affordable housing can be a challenge for individuals with disabilities; so, too, can be finding employment. RILC already focuses on both of these needs – and will soon be doing even more.
“There is such a great need for low-income housing in Rockland County,” says Peter Groos. “We have a housing advocate who is familiar with all of the main housing programs.” The agency will assist clients with applications for Section 8 Housing Vouchers as well as the Home Energy Assistance Program. “We can also help individuals with disabilities who require modifications to make their housing more accessible,” he explains.
Groos, who previously served as RILC’s Director of Independent Living Services, will now be leading the agency’s new multi-faceted Employment Services Program. Program components include a “Ticket to Work” Employment Network to individuals eligible under SSI and SSDI, and Supported Employment services for individuals with developmental disabilities through a Unified Services Contract with ACCES-VR (Adult Career and Continuing Education Services-Vocational Rehabilitation, formerly known as VESID).
“The Employment network is in place,” says Groos. “We are just finalizing the Supported Employment piece with ACCES-VR. It will include everything from work readiness and soft skills to job placement, on-the-job supports and evaluation. It is never easy to find a job. For someone with a disability it is even harder.”
“The unemployment rate for people with disabilities is about 60%,” says Hoehmann.
Educational Advocacy
Another area of focus is Educational Advocacy. “We recently brought on a new Educational Advocate who is working with parents of children with special needs,” says Hoehmann, noting that the assignment covers a lot of territory.
On the one hand, parents need help navigating the educational bureaucracy to find the services that are right for their children. “The Committee on Special Education process is complicated and we want to make sure that parents understand their rights,” says Hoehmann. Knowing what you are entitled to and how best to get it is becoming even more important as local school districts struggle with significant financial challenges and begin looking to special education programs as a potential source of possible budget cuts.
Donna Ehrenberg, the Parent Advocate/Resource Specialist who is taking on the Educational Advocacy challenge, is also trying to address gaps in existing services for children and young people with disabilities. “We are just beginning a Homework Help program for children with disabilities,” she says. “We will be having students from Rockland Community College and local high schools volunteer as tutors. We will be starting out twice a week with one-on-one help for individual students.”
RILC is also taking a close look at the difficulties which young people with disabilities – including those on the autism spectrum – face as they transition out of K-12 school programs with significant special educational supports.
Peer Recovery Center
In a particularly exciting new initiative, RILC is partnering with the Newburgh Independent Living Center and People Inc. on one of the new Office of Mental Health (OMH) Peer Recovery Centers. The four-county project will serve consumers in Rockland, Orange, Ulster and Dutchess Counties and is the first of its kind to be managed collaboratively on a regional basis by three separate nonprofits. “We will have three full-time peer recovery specialists as well as Andy Kohlbrenner, Co-Director for Rockland and Orange Counties. Andy has extensive experience and is also the Director of Program Development for RILC,” says Hoehmann. “We will work with people who have serious mental illness and help them improve the quality of their lives and reduce hospitalizations.” The peer-led program will feature a drop-in center and wide range of activities and peer support groups to help consumers link back to the community.
Hoehmann believes that the new Recovery Center is a great fit for RILC’s existing mix of services, given the agency’s long history of offering peer-support services. “It has been demonstrated all across the country that peer-support programs are effective and drive down costs because people are most likely to listen to a peer, someone who has been through what they are going through,” he says.
“In addition to the new services we will be able to offer, our staff will be able to benefit from state of the art training in peer support techniques which will be delivered through a technical support contract between the University of Medicine and Dentistry of New Jersey and the New York Association of Psychiatric Rehabilitation Services (NYAPRS),” says Hoehmann.
MRT Challenges Ahead?
With a number of significant new initiatives already underway, RILC has a lot to be excited about. At the same time, however, the agency has one major concern – one that it shares with many other providers of services for individuals with disabilities: How will the State’s rapid and radical redesign of Medicaid-funded services impact the mix of programs and services it currently provides?
“A couple of years down the line, many of our clients will have their medical care coordinated by a managed care organization,” says Hoehmann. What does that mean for PACER which currently accounts for nearly $6 million of RILC’s $7.3 million annual budget? “We believe that the program is extremely effective and generates substantial savings by preventing unnecessary hospital or nursing home placements and allows consumers to remain at home in their communities,” says Hoehmann.
In the meantime, RILC , like everyone else, is scrambling to partner with new Health Home networks where he hopes that provider-led care coordination will see and understand the benefits of peer-led programs –both in keeping costs down and in allowing consumers to remain at home, in the community, living full and productive lives.
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