Spotlight on Parent to Parent of New York State

Today’s Disabilities Leadership Council spotlight is on the organization, Parent to Parent of New York State and its Executive Director, Janice Fitzgerald. This organization creates a support system for parents of children with disabilities by connecting them with other parents who have shared similar experiences. “We cannot underestimate the importance of providing emotional support when a parent begins their journey,” Janice said during our interview. Parents often “feel stressed after their child’s diagnosis,” so the organization aims to show these parents that they are not alone. Parent to Parent is primarily a “navigator,” teaching parents how to “navigate their way through the system” by connecting them to other support groups at no cost.

One of Parent to Parent’s defining characteristics is its system of “support parents.” Generally, the support parents have used Parent to Parent in the past and want to help others in similar situations. According to Janice, there is a training system to become a support parent; one must contact the coordinator of the training center and the coordinator will, in turn, send information for a self-preparation course. To gauge the organization’s success, a letter is sent to ten percent of the families to see if their needs were met.

Although Parent to Parent is “less well-known” than other organizations for people with disabilities in the area, it is unique because its members hail from all areas of New York. Other organizations are mainly centered in New York City, but Parent to Parent reaches all parts of the state, from the Finger Lakes to Long Island. “We have people accessing our organization from rural areas to metropolitan ones,” Janice said. The organization also has few language barriers; all printed material is available in other languages and many of the parents involves in the support program can communicate in more than one language. As Stuart Flaum, Chairman of the Disabilities Leadership Council said, “It is wonderful that Parent to Parent works with all families regardless of language, culture, or disability. There is strength in numbers, and the sharing of information and strategies benefit everyone.” In total, the Parent to Parent contains about 1,200 support parents who offer advice and somewhere between 9,000 and 10,000 who seek assistance. As Janice said, the organization sustains itself because, “There are new babies born every year, so there will always be new parents calling us for help.”

Janice is already looking toward Parent to Parent’s future. She says that in five years Parent to Parent will, “still be there for parents, to help them make it through the emotional impact of having a child with disabilities.” Also, because social networking websites have become so prominent in America, she predicts that the organization will have “more of a virtual presence.” Stuart “applauds Janice for recognizing the importance of social networking—just look at http://especialmatch.com/ for an example of how social networking is making its way into our society.” Janice hopes that New York, as a whole, will “become more supportive” of families with children with disabilities and that there will be “less institutional placement” of children. Janice is also excited about the recent collaboration of Special Needs Family Planning, Parent to Parent, the Kiwanis, and Fordham University, because “more families will be helped.” She believes that their collaboration will “help [Parent to Parent] reach families that we are not already in contact with.” Stuart added, “Fordham University opened new doors for Parent to Parent, the Kiwanis, and Special Needs Family Planning at AXA. Now, families can gather together to see their strengths as opposed to their weaknesses.” For more information about Parent to Parent, please visit their website, http://www.parenttoparentnys.org/.

My Time, Inc. and Lucina Clarke

Today’s Disabilities Leadership Council spotlight is on the organization My Time, Inc. As stated on its website, My Time, Inc.’s mission is to “empower, educate, enlighten, and uplift parents of children with autism and developmental disabilities.” The Disabilities Leadership Council was fortunate to interview Lucina Clarke, the founder of My Time, Inc. During our meeting, Lucina described her inspiration and aspirations for her organization.

After spending more than ten years as a special education teacher, Lucina witnessed firsthand “the frustration of parents not getting support in raising their children with autism,” and decided to take a stand. She left teaching to “serve the needs of the whole family” and “opened [her] home” to families in need of support and understanding. Lucina applied her knowledge of children with disabilities to teach parents in Brooklyn, New York how to care for their kids while making time for themselves. When she taught, Lucina used to ask herself, “What is being done for the parents [of children with disabilities]?” By creating My Time, Inc., Lucina is now making an impact on families of children with disabilities. She made it her duty to assist parents in any way possible—by teaching them how to balance their personal lives with their parental roles, creating a network of parents, and by “adding a personal touch by giving each family valuable resources to use at home.” Besides assisting parents, My Time, Inc. works in conjunction with churches, schools, and the government to raise awareness about autism and other developmental disabilities. The organization holds numerous fundraisers throughout the year, one of the largest being a community walk at the end of May. Lucina finds community support essential to the success of My Time, Inc., saying, “A collaborative effort can be a successful effort.”

Over the course of the last two years, My Time, Inc. has expanded online to extend a support system to parents outside of the organization’s home in Brooklyn. Now, a network of communication between parents of children with disabilities is being constructed online. The organization’s growth is due in part to funds from government grants and private charities, as it is non-profit and free for any parent, grandparent, or caregiver of children with disabilities.

Currently, Lucina is using the funds raised to construct a community center for the families of children with disabilities. “It will be a community to teach [in] and learn [from],” Lucina said. The center will provide “recreational activities for families, workshops for parents, and day care,” the latter being a source of excitement for Lucina. As she mentioned during the interview, it is very difficult for families of disabled children to find reasonably priced, educated day care providers. For families attending My Time, Inc.’s educational workshops, Lucina plans to provide day care with trained personnel.

Although Lucina is busy working on many projects and fundraisers for My Time, Inc., this has not prevented her from examining the current mental healthcare system in America. During the interview, Lucina addressed the widespread discontent with the state of mental healthcare. In her words, the best way to increase coverage and improve the healthcare system is to “have your voices heard. You must be the advocates for your children.” According to Lucina, the best way to influence the government is to “take a risk” by forming a group to “e-mail Congress or petition.” She encourages change in the disabled community by remaining vocal in local, state, and national government.

For parents of children with disabilities, there “is a fight everyday.” My Time, Inc., under the guidance of Lucina Clarke helps to ease the struggle. As Stuart Flaum, founder of the Disabilities Leadership Council and longtime friend of Lucina said, “She’s an extraordinary person. Lucina is always on the move—speaking with leaders and politicians in Albany and in New York City, while working with schools, families, and volunteers to make the world a better place.” Lucina foresees greater expansion of her organization in the future and hopes that her community center will serve as a “model to create more parent community centers” across the country. For more information regarding My Time, Inc. or Lucina Clarke, please visit the organization’s website, http://www.mytimeinc.org/.