Parent to Parent of New York State Board Members

Sara is mom to a loving and funny young man with autism, cortical visual impairment and intellectual disability, and his younger brother and sister who have taken the ups and downs of the family journey in their stride. In advocating for her son’s complex medical, behavioral and educational needs, Sara has found great strength in the wider disability community.

Sara began her advocacy career as a labor law attorney in the United Kingdom where her work included appeals and grievances, discrimination cases, employment policies and procedures, and management development trainings. She was seconded by her law firm to act as in-house counsel for a year and a half at a government-owned non-profit organization.

She moved to her husband’s hometown of San Antonio, Texas in 2006. In Texas, Sara served on the Governmental Affairs committee of the Arc of Texas and worked with her local Arc chapter in San Antonio to train other parents in legislative policy advocacy. She served as a parent advisor to a non-profit foundation developing a one-stop connect program to autism services city-wide. In preparing for her move to NY in 2018, Sara was grateful to be connected with a Parent to Parent of NYS support parent who shared her experience of an adolescent child with challenging behavior.

Keeping physically and mentally fit is important to Sara and she enjoys yoga, tennis, hiking and biking with her family. She still has her British sense of humor and it has definitely been helpful on this journey! Sara is happy to have the chance to serve Parent to Parent of NYS in its mission of connecting and empowering families, which is a vital need in our diverse disability community.

Michelle’s work as a voice for those with developmental challenges began shortly following her youngest son’s diagnosis with autism in 2001. Later her son developed pronounced behaviors and epilepsy that compounded his challenges. Michelle recognized a lack of adequate support for families with children who possess severe behavioral challenges and understands the immense struggles parents who have children with complex disabilities face. Consequently, she is a strong advocate for supports for parents and individuals with behavioral challenges.

Michelle consistently translates her passion and tenacity for assisting those with developmental disabilities and their families into involvement and action. Michelle is a Support Parent for Parent to Parent of NYS and feels that being able to reach out and connect with other parents is essential. She has been a member of several committees and currently is also councilmember of the Region One Family Support Advisory Council, for which she serves as Chairperson of their subcommittee on behaviors. Furthermore, Michelle serves as a Lay Advocate and a Parent Representative and is also a graduate of the Partners in Policymaking spring class of 2015.

Michelle’s personal experience, coupled with her service through multitude committees and organizational memberships, gives her a broad base of knowledge from which she is able to draw when working to understand and assist families. She is a valuable and accessible resource for parents with children who struggle with behaviors and those who have difficulty finding appropriate supports. Consistently dedicated to advocating for families and individuals, Michelle seeks to proactively expand access and quality of services for families and individuals who are most in need.

After her son Donovan showed interest in playing baseball, Lizette started her own Challenger baseball league as she was not able to find a place in her community for him to play. The league has been very successful and now boasts 120 participants. Once the first season of baseball was over, Lizette felt a void that she needed to fill so she founded D3 Sports and Recreation, Inc. This non-profit organization seeks to bring additional sports and recreational opportunities to children with disabilities.

Since her son Donovan’s diagnosis Lizette has been a strong advocate and fundraiser within the Autism community. She has hosted the Annual Kids Rock Karaoke event which raises money to fund Autism services. As a parent Lizette is aware of both the costs of therapies and the lack of programs tailored for children on the spectrum. It is very important that services be free or at very low cost to families and her fundraising contributes to that effort.

Lizette is a graduate of John Jay College of Criminal Justice, where she majored in Deviant Behavior and Social Control. After college, Lizette worked for Grand Street Settlement, a community based organization located in the Lower East Side, as the Training Coordinator for the Adolescent Sexual Health Initiative. After the birth of her first child, she decided to take some time off and left the organization. Soon she was back into the workforce and changed careers. She became a controller and office manager for a Construction Management Company, where she manages the finances for four separate entities.

In her role as a board member for Parent to Parent of NYS, Lizette hopes to bring her love, passion, knowledge and experience in advocating for children with disabilities to help inform others on how to advocate for their loved ones.

Debbi is widely published in the field of intellectual and developmental disabilities (IDD) and behavior analysis, with peer reviewed research publications in some of the field’s premier journals such as the Journal of Applied Behavior Analysis and the American Journal on Intellectual and Developmental Disabilities. Debbi also serves on the board of editors for Behavior and Social Issues and for the Journal of Mental Health Research in Developmental Disabilities. Debbi’s research and clinical interests are in the areas of assessment and treatment of rigid and repetitive behavior, assessment and treatment of severe challenging behavior, drug and behavior interactions, applications of behavior analysis in child welfare, interprofessional collaboration, and advocacy.  Debbi currently serves on board of Parent to Parent of NYS, is on the advisory council for the National Council for Severe Autism (NCSA), serves on the Parent and Community Advisory board for the University of Rochester Intellectual and Developmental Disabilities Research Center (IDDRC) and the Parent and Community Action Board for the Adolescent Brain Cognitive Development (ABCD) Study^® at the University of Rochester.  Debbi also is a New York State Association for Behavior Analysis Public Policy co-chair, a board member on the Behavior Analysis Leadership Council (BALC) and the secretary for the Severe Challenging Behavior Special Interest Group of the International Association on the Scientific Study of Intellectual Disabilities (IASSID).  As previous chair of the New York State Association for Behavior Analysis’ Legislative Committee, her most recent accomplishment (December 2021) of shepherding the passage of the scope bill in NY to expand the scope of practice for behavior analysts is one of her proudest accomplishments.

Ann thinks that potential board members should have a basic knowledge of services and service systems for families and people with disabilities. They should be familiar with Parent to Parent of NYS and they should be a parent or have a family member with disabilities. Having a willingness to be a team member and collaborate with other board members in working with the Executive Director is crucial. Board members must be supportive of Parent to Parent of NYS within their community and value it as a resource for parents and family members in NYS.

Ann has resides in Western NY and has five children and three grandsons. Her three sons have developmental disabilities, and additionally, she is legal guardian for another relative who has a disability.

Ann is a lifelong learner and seeks to support positive changes and inclusive opportunities for people of all ability levels. She considers herself a “bridge builder” and works to be collaborative in her relationships across systems and within systems in an effort to support positive changes for people with disabilities. She works to keep her focus on the “whole system” knowing it is not about just her and or her family, but, about all the sons, daughters and families who are seeking a quality of life for their family members with disabilities and/or special health care needs.

Ann contacted Parent to Parent for support when it was first started under Easter Seals. She became a volunteer Support Parent and then added Board Member as a part of that process. Each step of her journey with Parent to Parent has been a supportive and positive experience. Ann recognizes it is important for families to have an opportunity to learn experts in various fields, but also from other parents. From Ann: “I think it is important for families to have different sources of information as they make decisions for their sons and daughters. Their lives may be “richer” in the long run!”