Our Stories... Our Lives...
Arc of Westchester, the oldest and largest agency in Westchester County serving children and adults who have developmental disabilities and their families, is fighting to preserve funding for critical services. These across the board cuts will directly influence the more than 1600 individuals whose lives are affected daily by these critical services. As Jeff Reuben, father of 3 year old Nicole Lauren born prematurely at 14 ounces and has been receiving Early Intervention Services funded through Medicaid, said, “Our most vulnerable populations are at risk of losing life essential services.” Jason, who is 36 and has Down syndrome, wrote Count Us In when he 19 years old. He is still fighting to be “counted in,” to be a viable member of his community, to live an independent life. The same is true for Patsy and Lois who recently celebrated 25 years of marriage. They work, vote and advocate for those who cannot advocate for themselves. Jennifer and Hartley, also married, have relied on their job coaches to secure employment and look forward to every new day. David Suss, now 56, lives in a group home, loves opera, and is fighting hard to have the word “retarded” banned.
Aaron Frishman, who is 10 and has autism, spends occasional time in Respite House to give his Mom, Dad, brother and sister time to renew their energy and focus on their own lives and now that Samantha Makris is living in a supervised apartment, her parents, Peter and Anna, can take a vacation and pursue their own interests. Jordan and Barbara know that they now “have a plan.” Jordan works on his social skills, loves to “invent” things and has even spent time at a college living in a dorm. Anne, David’s Mom, knows that even though her son has Down syndrome, chances are good that he will get a job and one day live in a supervised group environment. The lives are different, the stories are different. But what binds all of these families together is the fact that organizations like Arc of Westchester have provided services to enrich their lives, to enable them to expand the possibilities, to reach for their stars. Real and intended government cuts that fund many of these programs and services can devastate the progress that is being made by these miraculous people. We all must speak up and be heard.
Medicaid Service Coordination David and Anne
“David is truly a gem and a joy!” Anne…
David has bragging rights. He is a Special Olympian. Sports have been one of the ways David has normalized his life. Team sports such as basketball, ice hockey, and soccer have not only taught him socialization, but have given him self esteem and confidence. At 22, David, who has Down syndrome, lives at home and after high school graduation, entered the Choices Program offered by Arc of Westchester.
Five days a week he is given the opportunity to learn about community, develop his personal skills, explore job opportunities, and learn about self-advocacy. It’s been quite a journey from his Early Intervention services, starting at three months of age, to full day preschool offered by Arc of Westchester, to his current supported employment at Marshalls and Stew Leonard’s. Throughout it all, our family has grown and thrived. David’s older sister, Carrie, and younger sister, Emily, have been able to move on with their lives. They love their brother, are involved with his life, yet know that they are not his caretakers and that the services he receives have given him opportunities to expand his horizons.
We have been involved with Arc of Westchester for many years and are extremely grateful for the benefits we have received. I have become educated about the many issues that people with disabilities face. I have been on the Board for 23 years and was Co-Chairperson of the Westchester County Down Syndrome Support Group. Our lives are dedicated to our children, especially to making sure that David is cared for, and yet we have been able to enjoy ourselves. In fact, Joe and I recently took a motorcycle trip to Nova Scotia and knew that David had a strong and dedicated support team to guide him while we were away. Cuts to all of the services David and kids like him receive are devastating. Over the years, the service teams that work with us have broken down the freestanding silos of the past and Medicaid Service Coordination has guided us through the intricacies of receiving funded services. One day the team will help him find a job and assist him in living in a group home. But–we all must speak up and be heard.
Life Planning Jordan and Barbara
“We have a plan” Jordan…
I want to be a success at what I do. With the help and guidance of Arc of Westchester, every day I am able to keep busy, to learn and do the things that I enjoy. On Mondays, I work at Sports Time, Tuesdays I go to Creative Writing at Pace, Wednesdays I work at Marshalls, every other Thursday there is a group meeting at Arc of Westchester where we work on our social skills such as communication and listening. In the summer I attend the program at Manhattanville College and learn what it is like to live at college and participate in music, dance and art, and have some fun. One day I would like to be more independent and live in an apartment with people my age. I can cook and clean, am pretty mechanical, try to invent things and even collect vintage fans. It would be unfair to take money away from so many services that have helped me. I don’t want to be bored!! I want to keep on learning and doing things.
What I want for Jordan now is to be happy, live his life in a group home and have meaningful relationships with his friends and family. He is capable of so many things and through our 10 year involvement with Arc of Westchester we are able to say, “We have a plan.”
Concepts such as career paths and social paths are now realities for Jordan and for other people with disabilities. Through the Life Planning services of Arc of Westchester we have been able to set up Trusts and Guardianship for Jordan and know that in the years to come Jordan will be taken care of. Through the Sibling Group, his older brother, Jarod, has gained support and knowledge and understanding of our family dynamics. Taking away funding for these important services is to deny rights to people. We must invest in people. It’s the right thing to do.
Samantha and Peter
“Parks are fun but people matter.” Being wheelchair bound and having multiple developmental disabilities has not stopped Samantha from volunteering, socializing, currently writing a book, and, yes, even horseback riding. Skyping, emailing and IM-ing, especially now with her new boyfriend, keep her involved. The Choices Program of Arc of Westchester is preparing her for her next life desire: to get a job and make some money! She is realizing her interests and abilities and reaching her dreams and goals.
Six months ago our daughter, Samantha, at the age of 24, started a new and exciting phase of her life. She moved out of our home and into her own apartment which she shares with two other women and is supervised by a habilitation specialist. For most families, this may not be such a big thing. But for us, it is amazing. After 23-1/2 years of having her Mom and Dad take care of her, after countless brain surgeries, after losing her twin sister, Alana, 10 years ago, Samantha has been helped to become more independent by Arc of Westchester’s life skills and educational services. Soon after moving in she called us and could hardly contain her excitement when she said, “Mom, I just did my own laundry.”
As Samantha’s life grows and expands, so does ours. Knowing that she can live in a supervised situation out of our home has finally enabled us to breathe a bit easier. In fact we were able to take a vacation recently knowing that she was safe. I have spent many years lobbying for funds for her housing and am so upset now with these cuts to people with disabilities. I know that certain choices must be made by the government, but let them prioritize these cuts. As I say, “Parks are fun, but people matter.” For both Samantha and her younger brother, Christopher, Anna and I hope for continued growth, more independence and knowledge that they will be OK in the future.
Adult Living Skills
Jason and Emily
“Count Us In” Jason… The name of the book I co-authored when I was 19 years old is Count Us In: Growing up with Down Syndrome. I mean by this that people with disabilities have the same hopes, dreams and feelings as everyone else. We are all individuals who want to live a life of inclusion in society, to work, to have relationships. I am 36 years old and Arc of Westchester has been part of my life for all of those years. Through its many services and the amazing support of my family, I have had the opportunity to live independently in supported housing for the last 8 years, work at a productive job, establish social relationships, become politically active, and vote.
Emily… Everything that Jason has done throughout his life has been a miracle. And to think that when he was born some people suggested institutionalization! We would have none of that. We now know that so many tragedies resulted from putting newborns like Jason in institutions, not from the disorders themselves. We were proponents of Early Intervention when it was first being developed, receiving support and guidance from Arc of Westchester. Jason was among the pioneers of children with Down syndrome where the philosophy was that they could learn, they could live independent lives with loving relationships and be included in society. Arc of Westchester has been there with us every step of the way and we just can’t sit there and watch these services be denied.
I am also a participant in the Special Olympics and try to follow the legacy of my Dad, Charles Kingsley, of advocatI am just so extraordinarily proud of Jason and want ing for others and staying involved in charity funds. him to be happy and fulfill his own dreams. “Giving hope to the helpless” has been a motto of mine and I always tell people who are struggling with their disabilities to never give up.
Job Coaching and Employment Opportunities
“We ask for hope and opportunities.” Hartley and Jennifer are about to celebrate their sixth wedding anniversary. They live independently in Mount Kisco, New York, both work, and are active participants in programs offered by Arc of Westchester. Jerry, Hartley’s Dad, is an active Board member serving on various committees and dedicated to maintaining sustaining levels of support.
Jerry… Arc of Westchester is a family centric organization. Through its many programs, families are made whole and given opportunities to stay together. We want our children to participate in society, to feel good about themselves, have their own families. Eliminating funding for programs such as job coaching and employment training to people with disabilities will devastate families and destroy so many advances that have been made in recent years. Give them hope, give them an opportunity.
…Hartley I have been receiving support from Arc of Westchester for about 12 years. Thanks to my job coach and the onsite Arc of Westchester supervisor at my job at a well known law firm, I wake up every morning looking forward to going to work.
I feel productive and am appreciated by my co-workers. I am an active member of the Customer Services Council, a self-advocacy group at Arc of Westchester. I have learned to express myself and help others who have trouble speaking up for themselves. Without my job coach, I would not have the job I have now. Cutting funding for services will eliminate employment opportunities for those who are disabled and eventually cost society much more money.
Jennifer, Jerry and Hartley Jennifer… Being married, living independently and working have made me feel important and look forward to every day. My job coach at Arc of Westchester taught me about interviewing and helped me find my job. Hartley and I go on trips, attend social events here and have learned many life skills such as managing budgets and working with computers. Like many other people with disabilities, we both vote and I’m sure that most people don’t know that. When programs are cut or eliminated for people with disabilities they cannot learn the skills necessary to live independently, they become isolated and feel they are not contributing.
Employment and Independent Living
“There is nothing we can’t do— the sky’s the limit for us.” Lois… As a participant in the Customer Services Council, I am involved in helping people with disabilities receive the services they need to live independent lives.
The services provided to us help us stay involved with our local community and also contribute to our community. The cuts in aid will directly affect us as well as so many of our friends who have learned to live life with our disabilities. We are proud of how far we have come over the years and don’t want to lose any of the great gains we have made.
Lois and Patsy
Patsy…. We’ve been married for 25 years, and thanks to Arc of Westchester and other community services we can afford to live independently in Mount Kisco and are active citizens in our community. Although we are self sufficient, we still depend on some government services to assist us in different ways. Medicaid helps me out with my medications so my seizure disorder is well controlled and also enables me to have my walker so I can safely get around and get to my job everyday. I’ve seen a lot of changes since I became part of the Arc of Westchester family 36 years ago and am proud to say that we were ground breakers in having people with disabilities mainstream into the community. Services provided to those who need it help them lead active productive lives and frankly speaking, keep them out of institutions where the costs become tremendous and life can be terrible. We all must speak up, be advocates for ourselves.
Early Intervention Services “Our most vulnerable populations are at risk of losing life essential services.” Thriving at age 3 !! Our Nicole Lauren weighed 14.8 ounces when she was born prematurely. Her journey from the Neonatal Unit of Albert Einstein Hospital to Blythedale Children’s Hospital continues now with the Early Intervention Services coordinated and supplied by Arc of Westchester. Nicole receives Occupational and Physical Therapy, Speech and Feeding Therapy, Vision Services and Special Education instruction. Ten hours of therapy each week has enabled her to socialize with children her age, attend nursery school and meet major milestones in her growth and development. Nicole’s highly professional, caring and compassionate care givers now face the possibility of deep salary cuts if the Medicaid slashes to Early Intervention Services become a reality. Her life would change dramatically when payments to these therapists are under funded and we lose their talented services. Abby, Nicole’s Mom and a Board member of Arc of Westchester, knows what it is when EI services are not available. Her brother Stuart, a person with developmental disabilities received none of these services and now needs a lifetime of special services.
Nicole Lauren & Jeff
We want our lawmakers to be sensitive to our most vulnerable populations. Although it is obvious that Nicole is a determined, feisty little girl we need the continued support of our government to help her and children like her live healthy and fulﬁlling lives.
Respite and Family Support Services “Cutting essential services to people with disabilities will lead to a lost generation of children.”
Sheryl and Rob Rebekah, Aaron, and Zachary
Sheryl and Rob: We can’t imagine what our family would be like if we didn’t have the many services provided by Arc of Westchester. The Respite Program has given us the opportunity of keeping our family together despite the stresses, anxieties, and difficulties of raising a child with autism. Because of these physical, emotional and financial stresses, there is a 90% incidence of divorce in families with an autistic child. Aaron, age 10, needs constant supervision and attention which means that Rebekah and Zachary, his younger brother and sister, lose out at times. We all love Aaron dearly but know that occasionally we all need some “time off.”
When Aaron goes to Respite House, we can spend some quality time with Rebekah and Zachary while knowing that Aaron is in a caring and safe environment. Residential habilitation staff also come to our home and work with Aaron within his everyday familiar surroundings.
Respite care is funded by Medicaid and cutting these funds could devastate families. Yes, in the short run the government could save some money, but in the long run the cost will be enormous. Families will be split apart and become more dependent upon government services. Our goal for Aaron is that he will be able to live with a group of friends, have gainful employment and be somewhat independent. Only by maintaining these services like Respite and Family Support will this be possible.
Rebekah: Once a week I attend a Sibling Group at Arc of Westchester where we talk about all kinds of things that affect our life. It’s great to be able to speak to kids my age about these things. Zachary: The Respite staff let me do things with my family that sometimes I can’t do when Aaron is around. I have a lot of fun with him but sometimes need a break.
David Wow—I have been coming to Arc of
Westchester since 1974. I’m 56 years old and live in Ossining, New York in a group home with 5 other people. The people in my home and Arc of Westchester are like my second family because my Mother lives in Florida and I don’t get to see her too often. I come to Arc of Westchester every day and work in the café, cleaning the tables and keeping the café neat. The money I make is important to me and I know that any cuts in government spending to people with disabilities will affect me directly. This makes me angry! Even though Arc of Westchester has given me a lot over the years, I try to give things back. I am on the Customer Services Committee where we talk about services we need and make things happen. I get to help others who can’t express themselves well. We have worked hard to ban the word “retarded.” People with disabilities don’t use that word and don’t want other people using it. I also try to keep pretty busy. My favorite thing is to listen to opera, La Traviata being my favorite. I also love all kinds of music and play the piano and the clarinet and use the computer.
“I have 2 great families.” Living in the group house which is supervised 24/7 has given me the opportunity to listen to my music, spend time with my second family, get me to my job and feel good about myself. It would be terrible if these services disappeared. I would lose my job, life would be dull and boring and I’m worried what will happen to me. We also have to speak up for ourselves and educate other people about the services we receive and what terrible things might happen if the cuts get worse.
The lives of many of our familes are different, the stories are different. But what binds all of these families together is the fact that A...