The Inside Press

Magazines serving the communities of Northern Westchester

Disabilities

Behind the Launch of MyConnect

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Caroline Balil and her son

Living in such a digitally advanced world, you would think you can google the answers to just about anything. But when Caroline Bilal’s son was diagnosed with Syngap1, a rare genetic disease, and she was looking for answers and resources, the internet was not as helpful as she expected. She found herself spending hours on end navigating the difficulties of accessing information that she thought would have been readily available.

With the advanced state of today’s technology, it is both shocking and disappointing that this information is not easily accessible. Bilal was surprised that a platform that aided people in identifying resources for children with special needs didn’t already exist.

“I found it odd from the get-go that there isn’t a technology platform… that helps to connect parents and families to information, and also more systematically to other parents who have kids with similar profiles,” said Caroline Bilal. While Facebook groups can be helpful, there is no emphasis on the quality of information. And while word of mouth is another effective strategy, what works for one family often does not work for another. And so, with no existing efficient solution, Bilal set out to create one herself.

With the help of countless dedicated volunteers, Bilal and her co-founder, Faradjine Laurore, launched MyConnect on March 2, 2022. The website contains both a private social network, or a community feature, and a directory that provides well-researched special needs programs, providers, and resources in Westchester County. 

The directory provides an efficient approach to finding resources and shares the quality thereof. If you were to google “special needs schools and educational programs in Westchester,” you would obtain approximately five results.

MyConnect co-founder Faradjine Laurore

However, in reality, there are over 50 private schools and out of district schools for special needs students in Westchester. MyConnect provides an easy and free way for parents to access the information needed to best care for their children and to connect with other parents going through the same situation. “We want all parents to have access to this information and access to one another always,” shared Bilal. The platform provides a “one-stop” method with various helpful resources that would otherwise take a tremendous amount of time and effort to collect from countless different sites.

The ultimate goal is to make the research process as easy for parents of children with special needs as possible, so that they can focus on supporting their child and optimizing their potential. Parents and families should be able to focus on doing what is best for their child without being burdened by a time-consuming, inefficient, and sometimes expensive process.

“It is my deep belief that parents, regardless of their socio-economic status, have free access to the information that enables more successful advocacy for their special children. While I was fortunate enough to have the skillset, the time, the financial resources, and the endurance to pursue the research that ultimately helped my son… all parents should be given the tools that affords them this chance,” said Caroline Bilal.

Bilal expects to continue to grow MyConnect and reach the families and parents that need assistance. With roughly 28,000 families in Westchester having kids with special needs or disabilities, it is clear that there are an abundance of families who would benefit from resources and assistance. Fortunately, MyConnect is now here to provide that assistance to any families in need.

For more info, please visit MyConnectUSA.com

Ability Beyond Receives Grant to Help People with Disabilities Enter Workforce

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One in four Americans has a disability, according to the Centers for Disease Control and Prevention. And while people with disabilities have a lot to offer the workforce, there can be obstacles to finding employment, for both eager employers and prospective employees.

Disability Solutions, a group within Ability Beyond, a non-profit with its New York headquarters in Chappaqua, seeks to help overcome these obstacles – and now, they’ve been awarded a $50,000 grant from the PwC (PricewaterhouseCoopers) foundation to help them do so.

Kristine Foss, managing director of Disability Solutions, said the money will fund efforts including a year-long series of webinars for “talent acquisition professionals and job seekers.”

“For 60 years we’ve been working with job seekers in New York and Connecticut and helping them find jobs,” Foss said of her parent organization. “We had employers reaching out to us, and from those conversations, Disability Solutions was formed to build a bridge between employers and job seekers.”

Job seekers with disabilities vary widely, Foss said. Some have developmental disabilities; others have physical disabilities due to aging or medical disabilities; still others are veterans with service disabilities.

Job seekers with disabilities may have questions as they try to find employment, Foss said. They may be unsure whether or not to disclose a disability to a potential employer; they may need guidance on “how to professionally follow up, make sure keywords are in their resumes, how to navigate the interview process” and even how to “dress for success,” Foss said.

“Some of it is great advice that anyone can benefit from,” Foss said. “But of course we target it to people with disabilities.” The first webinar for job seekers launched this past winter with several planned for the coming months. Just this past week, webinars to help employers prepare for a pay equity audit and to help jobseekers decide on disclosing if they have disability were launched. Six additional webinars are planned for May and June and additional information to register can be found at disabilitytalent.org/events-webinars.

Disability Solutions also offers information to talent acquisition professionals. Foss said that many companies really aim to benefit from hiring the many talented and hardworking people with disabilities, but may need help removing obstacles in their hiring processes. For example, an online application can have “unintentional barriers,” Foss said.

Ability Beyond clients receiving therapeutic services at the Chappaqua Crossing location. Photo courtesy of Ability Beyond

Foss’s group has helped large companies like Pepsico, American Express and Synchrony Financial hire thousands of people.

Shaileen Brighton-Ortiz, assistant director of programs and services in New York, works out of Ability Beyond in the recently opened Chappaqua Crossing location. About four years ago, Ability Beyond moved out of its former location on Kisco Avenue in Mount Kisco. “We’ve grown rapidly since then because we’ve been able to serve more people in the space we’re in now.”

“I oversee the day and work programs in New York,” she said. “Our New York office is located here in Chappaqua. We serve about 200 people in our work program and about 180 people in our day program.” Ability Beyond does fundraising, and receives funds from New York State and other government partners. “We do get grants but not enough of them,” she said.

It’s a continuum of services, Brighton-Ortiz explained. People with disabilities come into the program “mostly from transitional programs in the high schools.” They are then assessed and are either matched with an internship or a pre-vocational program, the aim of which is to hopefully prepare and transition each person to an internship if possible.

“Once they acquire skills that will help them be successful in competitive employment,” these individuals are then graduated, referred to a state agency and then work with an employment specialist (often called a job coach),” Brighton-Ortiz said.

The day program has a site-based component and another component that is really “without walls,” Brighton-Ortiz explained, but the location in Chappaqua operates as a “hub.” From there, people may go out to internships, physical, recreational, or cultural activities. “There’s a blend of programming,” she said. “We don’t really believe in an adult day program. People are able to graduate when they’ve accomplished their goals. We partner with Disability Solutions and other agencies. It’s like graduating from high school to college – they have options.” Currently, about 40 percent of the people in Ability Beyond’s program are in the site-based program and 60 percent in the “without walls” component.

“I’m really excited to spread the word about this innovated and talented group of job seekers nationally,” Foss said. “Companies are looking for talent.”

From Windmill to the Great White Way…

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Armonk Native Bonnie Gleicher’s New Children’s Musical Addy and Uno Captures Audience’s Hearts

“I actually sang before I spoke,” reminisces 29-year old former Windmill resident Bonnie Gleicher, who wrote the music and lyrics for the children’s off-Broadway show Addy and Uno currently playing at The Kirk Theater on West 42nd Street. The family musical featuring a colorful cast of characters represented by puppets touches on themes such as disability, kindness, bullying and friendship.

One of the main characters “Uno”, a math whiz, is entered in a math competition but fears being on stage due to his autism. But his friends with other disabilities ranging from ADHD to mobile impairment help him overcome taunting from the school bullies and ultimately succeed in the end. There are themes any grade schooler can relate to resulting in a heartfelt musical with soaring tunes that is sure to leave audience members smiling and cheering for “Uno.”

A Love for Theater at an Early Age

Music was a big part of Gleicher’s life from a young age. She recalls as a toddler prancing around her house, pretending to be “Ariel” from The Little Mermaid. As an elementary school student in Armonk, Gleicher landed the lead roles in both Peter Pan and The Wiz of Oz.  She soon yearned to audition for roles in the city and the talented Gleicher was cast as the orphan “Kate” and the understudy for Annie in the Broadway national tour of Annie as a 10-year old and then as “Young Jane” in the Broadway musical Jane Eyre when she was 12.

Gleicher is thankful for her supportive parents, Teri and Kenny Gleicher, who still live in Windmill and helped her achieve her dreams. “Growing up, my mom drove me in and out of the city along the West Side Highway to audition and perform in New York. She never pushed me to do any of this. She basically saw I was living my dream and sacrificed a lot by touring the country with me in Annie for eight months while my dad and grandmother helped raise my sister. “

Gleicher took a hiatus in high school from performing in the city and instead focused on her schoolwork while continuing to take piano lessons at home. “It basically took two years until my piano teacher told my parents that they were wasting their money,” Gleicher says with a chuckle.

Instead of practicing Chopin, Gleicher was writing songs. She stopped piano and began to focus on songwriting more seriously. She still did a few talent shows and open mic nights at Byram Hills High School but stayed out of the limelight.  Gleicher recalls how her social studies teacher Matt Allen was always supportive of her and they still keep in touch today.

Meeting at Decca Records: A Defining Moment

And go places she did. A journalism student and Phil Beta Kappa graduate of the University of Wisconsin at Madison, Gleicher was lucky enough to have one of her demos heard by an executive at Decca Records as an undergraduate. “He told me this all sounds great to me, but I hear theater in it.” It was a defining moment for Gleicher.  “I thought to myself, oh my God. That makes so much sense. That brings everything that I’ve ever done together.” And so Gleicher wrote her first full-length musical in her senior year of college and has continued writing ever since.

The Addy and Uno show was conceptualized by Dr. Nava R. Stilton, a developmental psychologist who wrote the Realabilities Educational Comic Book Series. The series was developed so that individuals with disabilities can see themselves represented positively on-screen, and typical children and adults can become increasingly knowledgeable, sensitive and interested in their peers with disabilities. Gleicher met Stilton through a mutual friend and Gleicher was so excited about it that she knew she had to write the music and lyrics.

National tour of Annie
Gleicher in The Wiz of Oz on the left

The Show’s Short Timeline

Gleicher describes the writing process as “euphoric” and “seeing the impact the show has had on audiences is incredible. While writing the music, I knew it had to feel fun and playful and comical, while revealing the characters’ disabilities in a way that was sensitive and touching.” The day after meeting Dr. Stilton she wrote Uno’s anthem “Brave” and was able to complete all the music within a month.

The show was first performed at the 14 Street Y downtown and then went to Off-Broadway within a year and a half which is a very short timeframe, notes Gleicher. Most shows take 5-7 years until they come to fruition. Gleicher credits the producing team of Tom and Michael D’Angora of making the show more interactive and improving the dialogue before the production moved to off-Broadway.

“Writing musicals is such an investment in every way. There are so many up and downs with doing what you love but it is really satisfying when you get to see the impact this show has on people,” comments Gleicher. “There are a lot of shows that the world wants but not what the world needs. Addy and Uno is a story that the world needs.”

The Future for Gleicher

Up next, Gleicher is writing an original family musical called Little Things. Gleicher who previously lived above a children’s playground in the city, used to love listening to the children at recess. “It is such a beautiful sound and I thought how can I capture that in a musical. It’s about children tasting freedom and going up against a tyrranical principal.” The show is currently being produced by the New York Theatre Barn and NYU Tisch’s Graduate Musical Theatre Writing program.

Addy and Uno will be performed at Gleicher’s alma mater Wampus Elementary School on May 15 and Gleicher will be in attendance. So what would Gleicher say to any aspiring songwriters or thespians in the audience? “If you love what you do, you believe it’s your purpose, and your intentions are pure, you will live your dreams.”

Arc of Westchester Hosts Art Reception at Chappaqua Library Gallery

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L-R: Robert E. Miss, chair, Advisory Committee, gallery265; Nancy Patota, executive director, Arc of Westchester Foundation; Rita Ross, Chappaqua resident and board member, Arc of Westchester; Tom Hoffman, donor, Arc of Westchester; Jean Hoffman; Ric Swierat, executive director, Arc of Westchester

Chappaqua, NY – Arc of Westchester hosted a reception on Thursday, September 7, at the Chappaqua Library Gallery to view and discuss “In the Moment,” which features works from talented artists with intellectual and developmental disabilities. All of the artists are participants in gallery265, Arc of Westchester’s creative arts program. “In the Moment” was on exhibit through September 23. For more information, visit www.arcwestchester.org.

Arc of Westchester donor Tom Hoffman and his wife Jean purchase a painting by John Israel, a gallery265 artist.

 

 

 

Kathy Higgins and Rita Ross, Chappaqua residents and members of The Exceptional People Committee, a New Castle organization that is trying to find ways to better the lives of people in the town who have special needs, in the areas of social, educational, training and vocational opportunities, transportation, housing, and care services.

 

 

 

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About Arc of Westchester

Arc of Westchester, founded in 1949, is the largest agency in Westchester County supporting children, teens and adults with intellectual and developmental disabilities, including individuals on the autism spectrum, and their families. Over 800 employees provide more than 2,000 individuals throughout the county with a broad range of innovative and effective programs and services designed to foster independence, productivity and participation in community life. The mission of Arc of Westchester is to empower children, teens and adults with intellectual and developmental disabilities, including individuals on the autism spectrum, to achieve their potential by strengthening families and encouraging personal choices, abilities and interests. Arc of Westchester is a chapter of NYSARC, Inc. and The Arc.

Resident Geri Mariano’s Trying Experiences with Medicaid Managed Care

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By Grace Bennett and Janie Rosman

Geri Mariano
PHOTO BY RICHARD CAPLAN

Geri Mariano (also known as Geralyn Pinciaro), a much beloved Armonk resident with a myriad of health care needs, has hit too many brick walls in her odyssey through the health care morass. Inside Armonk contacted local and state officials with the goal of spotlighting her situation…in the hopes that Geri can receive the care she deserves and within her means.

“Geri Mariano imbues the spirit of the community and pride in her hometown, and it in her,” State Assemblyman David Buchwald stated when contacted to discuss Geri’s recent issue with obtaining optimal health care to address her unique medical needs. “What saddens me so much is that health care policy hasn’t done right by her, most recently in June 2016.”

Background

Governor Andrew M. Cuomo’s Executive Order No. 42 regarding Medicaid redesign was to cover recipients who have long-term disabilities and chronic health problems such as diabetes, heart disease, substance abuse and mental illness. Some constituents like Geri Mariano found their coverage changed as a result of the Governor’s April 12, 2012, directive, which established a state-based health benefit exchange per the Affordable Care Act.

Born at White Plains Hospital in October, 1967 with Diastrophic Dysplasia/Dwarfism, Geri was abandoned at birth by the biological parents. It wasn’t until she was 18 months that then Geralyn Pinciaro was taken in by William and Doris Mariano after her story appeared in the Gannet Newspaper. She was raised in a loving home; yet never legally adopted, Mariano was an official “Ward of the State” and remained under Department of Social Services’ protection until she turned age 18. Afterwards she went years without needing re-approval for Medicaid coverage.

Approximately 10 years ago, she would be re-certified every other year or so. When she received a letter stating she would be moved from Straight Medicaid in January. 2013, she asked NYS Assemblyman David Buchwald (93rd A.D.) to intervene on her behalf. After a few calls, the Assemblyman’s Office found there had been a mistake and Mariano’s status was not supposed to change; her status was changed back.

A letter last summer mandated Mariano to enroll in a managed care plan by July 31, 2016. As no exemptions for Medicaid enrollees applied to her situation, she was automatically enrolled in MVP Medicaid Managed Care. As a result of the change, Mariano can’t see her PCP whose office is in downtown Armonk and has been accommodating and an advocate for her for over 20 years. Additionally, her aides took an unexpected pay cut due to the coverage switch. And the prosthetist who got Mariano up and walking again after several years is not covered. After making much progress regaining the ability to walk, Mariano has not been upright since November, 2016.

Mariano was the first special needs student with a physical disability to be enrolled in Byram Hills School District in 1972 without the Federal Mandate to do so; she graduated in 1985. Mariano graduated from Smith College n 1989, one of its first matriculated students with congenital disabilities. In 2013, she received the Spirit of Independence Award from Westchester Disabled on the Move in Yonkers. “We all want to assist Geri, whom I have known for many years growing up in Armonk,” said Westchester County Legislator Margaret A. Cunzio, representing District 3 (Mount Pleasant, Pleasantville and parts of North Castle) “Anything we can do to bring this issue to the forefront and seek assistance from New York State is imperative.”

Her two Fair Hearing appeals (when no  representatives from DSS or Medicaid Choice showed up) were denied last fall. Mariano was informed by the Hearing Judge that his decision could be overturned but that she would not be made aware if in fact it was. Mariano is frustrated to not know if the Hearing Judge ruled in her favor and the decision was overturned by Albany. Mariano reached out to friends for advice with her predicament, one of whom posted her situation in the Facebook group, Armonk Moms. At press time, discussions have started whether a letter writing campaign and rally would help bring wider attention to this matter.

The Inside Press has since reached out to the Governor’s press office, the New York Department State of Health, Representative Nita Lowey (D-NY17) and State Senator George Latimer (37th S.D.). As this is a State matter specifically, Roy Loewenstein of Lowey’s office, suggested the State could provide the most comprehensive answers.

A letter was being drafted by Andrew Ferris in State Senator Latimer’s office, and awaits signatures by the senator and Assemblyman Buchwald. “There’s no hardship exemption, where someone says, ‘What’s best for Geri given her situation?’” Buchwald said. “My role is to try to cut through the bureaucracy as the system is not designed for folks like Geri.”

At press time we are awaiting a response from the state. Mariano wants an opportunity to share her story with Gov. Cuomo’s administration representatives and relate that the present exemptions DO NOT fit every situation of those who have had coverage throughout their entire lives. States Geri: “There are others in the same boat. I need to be their voice, too.”

Grace Bennett is publisher and editor of the Inside Press, which she founded in 2003. Janie Rosman is a freelance writer and editor whose work appears in local and regional publications. She chronicles the Tappan Zee Bridge replacement project at Kaleidoscope Eyes.