NYAIL is pleased to introduce you to our
"Faces of Independent Living"
People who have become part of the New York State Independent Living Center (ILC) success story
Access to Independence of Cortland County (ATI)
In keeping with ATI's theme "Faces of Independence," I would like to share a story about Dorothy. Dorothy sought assistance from ATI at various times and depending on personal circumstances in her life. She is the perfect example of what a "face of independence" looks like.
I met Dorothy in 1998. She was seeking assistance for her 17-year-old daughter, Amy, who was in a rehabilitation center in Schenectady, New York. Amy was in a car accident one year prior and acquired a traumatic brain injury. While Amy was in a coma, Dorothy spent about a year with her at Robert Packer Hospital in Pennsylvania. However, when Amy was strong enough to go to the rehabilitation center in Schenectady, Dorothy came back home to Cortland. During this time, Dorothy not only faced the ordeal of her only child acquiring a traumatic brain injury, but she also lost her full-time job. Needless to say, it was a very depressing time for Dorothy.
Dorothy wanted to help her daughter but she was not able to be in Schenectady every day. She told me she didn't know where to turn, but had heard that I also underwent rehabilitation at the same center in Schenectady. ATI was in its very early stages of development at that time, and it was located in a single room in the County Office Building. The first thing I did was offer Dorothy peer counseling support. I had "been there and done that," and my parents had faced the same dilemma when I was in rehab. There was one major difference between our stories though -- I was able to speak and talk with my parents by phone, whereas Dorothy and Amy were not able to communicate due to her brain injury. However, I was still able to alleviate some of Dorothy's fears about life after disability and I encouraged her that things would get better. The next thing I did was provide her with information and referral services. I also contacted the rehabilitation center in Schenectady and found a counselor there to work with Dorothy and her daughter; this was to help ensure a smooth transition from rehabilitation to community living for Amy. After providing Dorothy with these initial services, our paths did not cross for several years.
In 2002 Dorothy came back to ATI -- She was looking for help with moving Amy from Troy to Cortland. Dorothy began working with Sue Lewis, ATI's Independent Living Coordinator. In situations like Dorothy and Amy's, Sue works one-on-one with individuals to find the best possible solutions to keep families together. Although Amy was not able to move back to Cortland, Sue advocated with Amy's service providers in Troy and ensured that Amy was placed in housing for individuals with traumatic brain injury. Sue also made sure that Amy was receiving appropriate activities of daily living -- Things such as physical therapy, socialization, and inclusive community activities.
Now that Amy's needs were stabilized, Dorothy felt that she could spend some time on herself. She began attending classes and social activities at ATI, and also began meeting with Sue on a regular basis for assistance with independent living skills (e.g., household budgeting and Social Security work incentives). In addition to working with Sue, Dorothy joined ATI's peer mentoring program. She started working with Aaron Baier, ATI's Consumer and Systems Advocacy Coordinator, and was assigned a peer mentor (i.e., a person with a disability who has successfully maintained employment). Dorothy and her mentor attended ATI's peer mentoring workshops, which were instrumental in helping her land a part-time job at the JM Murray Center.
Unfortunately, as the years passed, Dorothy found herself facing another dilemma with her aging mother. Dorothy began working with Sue again -- This time they focused on how to navigate many of the systems in place to care for an aging parent who wants to remain living in the community. At one point, Dorothy's mother had been placed in a nursing home due to her failing health and lack of caregivers. As her mother got stronger, Dorothy sought help from ATI to bring her back home; however, the house had been deemed unsafe. Sue referred Dorothy to ATI's Architectural Barrier Programs. Dorothy and her mother qualified for ATI's Access to Home Program, and plans were made to retrofit and make the house both safe and accessible. Though there were many challenges and hardships for Dorothy along the way (including a leave of absence from her job to care for her mother), Dorothy respected her mother's wishes and brought her home.
Between 2003 and 2010, Sue helped Dorothy and her mother by employing a variety of ATI's services – Services such as advocacy, information and referral, independent living skills training, and peer counseling. On many occasions Dorothy just needed someone to listen. Dorothy has expressed to me numerous times that she doesn't know what she would have done without ATI's services and the personal support provided by Sue.
Over the years, Dorothy has become a very familiar face around ATI. She continues to seek monthly assistance with household budgeting, uses ATI's computer lab, and regularly attends peer mentoring workshops to remain gainfully employed. In addition to receiving services from ATI, she became an ATI volunteer. She now assists me with office work and volunteers during many of ATI's social activities. She is also an advocate, traveling to places like Albany and Washington, DC to help fight for issues that are important to people with disabilities.
ATI Staff Member
Caspar has a primary diagnosis of Autism and has struggled in past programs to obtain or maintain employment due to his barriers with communication and social awareness. ARISE arranged for his participation in the annual Disability Mentoring Day in Onondaga County and linked him with a key employee of a local pest control company. The key employee has a son with a similar diagnosis -- She not only understood Caspar's needs, but she also recognized some of his unique skills. After enjoying a day of job shadowing at the company, Casper left not expecting the job offer that soon followed. The key employee had recognized that Caspar's very specific skill set might be useful to her company, and she offered him a temporary position for the duration of their busy summer season. Caspar, with the support of an ARISE job coach, went to work for the company -- His primary duties were to organize, stock, and clean the warehouse area. However, Caspar soon assumed additional duties and took it upon himself to let the key employee know when stock was running low and it was time to place an order. The key employee also noticed that Caspar enjoyed tinkering and fixing things, and before the end of the season she offered him a permanent position with the company. The company has planned that Caspar will be trained by an experienced staff member on how the equipment works, and can then assist with the maintenance of their small equipment. Casper has enjoyed his job, his co-workers, and learning new skills.
Catskill Center for Independence (CCFI)
At an initial meeting with a new CCFI consumer, the consumer disclosed that she has a long history of substance abuse, a gambling addiction, and difficulties maintaining employment. She was very forthcoming with the struggles she faced. She stated that she had been living clean and sober for almost six months, was in the process of filing bankruptcy due to tremendous debt, and was trying to secure extended visitation with her young son. She stated that she knows she can accomplish anything when she is "straight" -- She discussed how she became pregnant at a young age, but went on to complete her GED as well as an Associate of Applied Science degree in Business Administration. She was currently working on her BS in Accounting.
CCFI staff had shared an employment option with this consumer, which she followed-up on before her CCFI meeting. When she arrived for her CCFI meeting, she was very excited to share that the company had just called her and offered her the position. She stated she was feeling "nervous, excited, and pretty good about myself for the first time in a long time." She asked CCFI staff to "check in from time to time 'cause I may need support." To date, she is doing well!
Center for Independence of the Disabled, New York (CIDNY)
A wheelchair user reported to CIDNY that the management of his building was ignoring his inquiries about accessibility modifications to his apartment and the need for a parking space for an accessible van. CIDNY wrote to the housing management company and provided them with education about their obligations pursuant to federal, state and local law. The management company agreed to modify the apartment and provide a space for the van.
A deaf consumer, who works for a giant chain, came in to CIDNY to report that the chain store did not have sign language interpreters at staff meetings. CIDNY wrote an advocacy letter to the company citing applicable law. There is now an interpreter at the staff meetings.
CIDNY staff met with a consumer regarding her denied access to a mental health agency because she used a service animal. CIDNY staff called the agency and the Executive Director stated that he had to choose between consumers fearful or allergic to dogs, and the CIDNY consumer. CIDNY staff informed the Executive Director that they had to accommodate the consumer and her service animal. The consumer, CIDNY staff, and a supervisor and case worker from the mental health agency met. It was agreed that the consumer would be allowed to use all areas of the mental health facility with her service animal.
CIDNY assisted a man with a disability who has cancer. He has Medicare, Medicaid, and a Medigap plan. He needed access to several specialists who do not accept Medicaid. For that reason, he purchased a Medigap policy that pays these costs for any doctor who takes Medicare – This way he does not have to worry about finding Medicaid providers. For several years, Medicaid paid this man's Medigap premiums because it was cost effective to do so. However, Medicaid recently reduced the amount it pays to supplement Medicare claims. Medicaid sent the consumer a notice that it would no longer pay the premiums because of this new payment rate. Medicaid based its decision on a one-year review of his claims. Over the following four months, his medical claims increased dramatically due to chemotherapy, radiation, and related expenses for cancer treatment. CIDNY staff reviewed the consumer's claims and found that Medicaid paid less in premiums than it would have paid on its own for these claims, even with the reduced payment rate. CIDNY requested a hearing to challenge the termination, and asked that coverage continue pending a result of the hearing. At the same time, CIDNY staff showed the Medicaid staff its own calculation of cost-effectiveness. Medicaid agreed with the finding and reinstated the premium payments.
A man who is Deaf came into CIDNY after losing his job at Ellis Island due to Hurricane Sandy. CIDNY staff explained to him that, because his job loss was specific to the Hurricane, he was eligible for unemployment. Staff helped this consumer create a personal account with the Department of Labor. Staff also advised him that he would need to report to the Department of Labor on a weekly basis, either by mail or by computer, to continue receiving his benefits. Because he did not feel entirely comfortable using the computer and was not feeling certain that he would remember to mail a weekly postcard, CIDNY staff had this consumer come in for a brief training on reporting. Staff also helped the consumer to set up direct deposit – They contacted his bank to acquire the necessary routing information and were able to have his unemployment benefits go directly into his account.
CIDNY assisted a woman who has multiple disabilities and limited English proficiency, though she speaks Russian and Tajiki fluently. She is a survivor of torture who has been harassed by her landlord. CIDNY helped her gain acceptance in a home- and community-based care program, and also helped her get connected with the health and housing assistance she needed to prevent her from being institutionalized.
Harlem Independent Living Center (HILC)
A few years ago a double-amputee consumer from a West-African country came to HILC for assistance with immigration, housing, and employment issues. She spoke only French and her native language. Two years later, she is now enrolled in college, speaks English, has a brand new apartment, and is studying for her green card (lottery). She also volunteers with HILC.
A deaf consumer called HILC staff and stated a stalker was at her apartment. HILC staff coordinated with the local police and the District Attorney's Office to respond immediately. The consumer was relocated to housing in a different borough as the police and District Attorney's Office worked to locate/arrest the alleged stalker.
Resource Center for Accessible Living (RCAL)
A 40-year-old woman with an intellectual disability called RCAL and stated "My father is in the hospital. I do not know what to do." Her friend had suggested she call RCAL. She had lived with her parents her entire life and had no services after high school. RCAL staff helped her secure expedited eligibility for services through the Office for People with Developmental Disabilities (OPWDD), and arranged for an emergency placement when her father passed away later that month. Her mother had passed away five years earlier. The most important thing to this consumer was being able to keep her dog. The housing agency identified by RCAL was willing to get the approval of all the group home residents, and the consumer was able to bring her dog with her when she moved. As this consumer's Medicaid Service Coordinator, RCAL arranged for the services she needed to learn to live independently, including caring for her dog. Today, this consumer has her own apartment and a job.
Southern Tier Independence Center (STIC)
Sam is a 23-year-old man with a developmental disability who had struggled through life without any supports outside of what his family could provide. Although he had attended special education classes at school, he was never referred to the Office for People with Developmental Disabilities or Home and Community-Based Services waiver services. Unfortunately, this total lack of outside supports resulted in a serious incident that landed Sam in the criminal justice system. Following a similar crime he perpetrated as a teen, Sam had complied with all of the stipulations of probation for seven years without incident. Unfortunately, his probation officer was also unaware of services and supports that might have helped Sam avoid any future trouble.
Sam's public defender called STIC's Community Integration Advocate and explained that, without any counseling to give Sam the tools to control his impulses, he had committed a crime similar to the one he had perpetrated as a teen. She also said that Sam's cognitive impairment was not considered in his defense years ago, and that she was desperately trying to demonstrate to the judge that this was a major factor in his repeat offense. She asked STIC's Community Integration Advocate to write a letter outlining the support services STIC could offer to Sam if he were released back into the community. The alternative to releasing him with mandatory services in place was a term in state prison.
The Community Integration Advocate met Sam at the jail and further consulted with his attorney. She then created an outline of the services that she and STIC's psychotherapist would provide. This document and the Community Integration Advocate's testimony about her long experience working with people with developmental disabilities were taken into consideration at Sam's sentencing hearing. The psychotherapist attended a second hearing the following week, where he gave detailed information about his counseling services.
Two weeks later, Sam was released with the stipulation that he begin counseling and Community Integration Advocate services at STIC immediately. He is still living in the community and receiving regular services from STIC.
STIC advocated for a 14-year-old with a rare genetic condition that compromises all of her organs and joints. She also has global developmental disabilities (academically she is at a kindergarten level) and a terminal liver condition. She is a happy child who loves school and friends. It was very important to her to be able to attend high school with her older brother.
For all of 6th, 7th, and 8th grade, her custodial grandmother and a STIC service coordinator battled the teachers and school district to keep her in the middle school. They had insisted that she needed to be placed in BOCES. The consumer is happy, cooperative and friendly and has no negative behaviors, but she performed low academically and wasn't making any "measurable progress."
This fall she finally made it to the high school. She loves her classes, she works in the bookstore, everyone says "hi" to her in the hallways. All of her teachers love her and are happy to work with her where she is at academically and other life skills. She is where she is now because of the constant fighting by her grandmother and the service coordinator to keep her mainstreamed. The grandmother thanks the service coordinator for never giving in and calls her a "tiger."
Staten Island Center for Independent Living (SICIL)
SICIL serves a 62 year old consumer who suffers from orthopedic and anxiety issues. She has been a member of SICIL since 2009, and she has participated in two groups for women with disabilities.
When SICIL staff first met the consumer, she was lonely, frustrated and unsure of where to find help. She began attending the Abuse Prevention Workshop for women with disabilities last year and reported that she was living with her son, who led a less-than-tranquil life. She was desperately seeking other living arrangements, as well as benefits information and advice. SICIL staff provided her with information about Access-A-Ride, SNAP benefits (food stamps), and other programs/services she might be able to utilize. In addition, she enrolled in a SICIL Health and Wellness Workshop for women with disabilities that began immediately after the Abuse Prevention Workshop ended.
Over the last year, SICIL staff have seen the consumer's environmental and emotional circumstances improve. For example, she spoke openly and honestly during both of the previously mentioned workshops, even becoming close friends with some of the members. With the help of the SICIL housing counselor, she was also able to locate and move into a shared-living residence.
Overall, the consumer said that the topics and techniques discussed during the Abuse Prevention Workshop and the Health and Wellness Workshop have helped her see herself and her life in a clearer, more positive way.
Westchester Disabled on the Move (WDOM)
WDOM has been working with a 64-year-old who is a retired school bus driver who is deaf from birth and has Parkinson's Disease that forced his retirement. WDOM assisted him with his SSDI application. The consumer has been struggling to afford his medical care and prescriptions, as his retirement plan limits reimbursable expenses. He also has significant credit card debt and unpaid income tax burden. The consumer's sister has been caring for their elderly parents, and she has been struggling to cope with the consumer's new need for support and assistance. WDOM has been assisting the consumer with:
- Exploring additional medical coverage -- Medicaid application with Pooled Needs Trust to protect available income
- Working with credit counselors and the IRS to manage his existing debt
- Peer counseling to support him in his retirement transition process
- Appropriate referral for psychiatric evaluation
Without independent living interventions, this consumer's future independence could be jeopardized with the possibility of expensive institutionalization; his sister was already discussing the potential for an "assisted living" placement. The consumer is very protective of his independence and lifestyle, and WDOM has been assisting him with maintaining this independence.
Western New York Independent Living Inc. (WNYIL)
Melissa is a 24-year-old African American woman suffering from severe mental health complications. She came to WNYIL looking for assistance with financial obligations and employment. The benefits staff assisted Melissa in obtaining temporary cash assistance, Medicaid, and food stamps from the Department for Social Services program, while actively seeking employment and housing. After 120 days of receiving services, Melissa obtained full-time employment at a nursing facility, preparing meals. She receives a health benefit package including a 401K opportunity, vision and dental, while moving into her new three-bedroom apartment on Buffalo's East Side making a successful transition, improving her quality of life significantly.