Parent To Parent of NYS


Statewide News

Regional Coordinator Position Available in Finger Lakes (Rochester)

We have a part-time Regional Coordinator position available in our Finger Lakes office.  More information is available at the link below.

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Regional Coordinator Position in Hudson Valley Office

We are seeking a part-time Regional Coordinator in our Hudson Valley office, located at Westchester Institute for Human Development.  Additional information available through the link below.

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YOUTH POWER is seeking youth between the ages of 14-24

YOUTH POWER! is seeking youth to be members of a peer-run statewide planning group for AMPLIFY-NY! Youth and young adults with developmental and other disabilities ages 14-24 are invited to join this group to help design and plan regional youth leadership forums across the state, beginning with the pilot forum in the Capital District. Young people who are interested in joining this group can apply by clicking here.

Members of the planning group will also have the opportunity to be selected for a scholarship to attend the University of YOUTH POWER! (UYP), the premiere for-youth-by-youth social justice conference modeled after a college experience. Planning group members must be 18+ to attend UYP. For more information on the AMPLIFY-NY initiative, please visit

State Education Department proposes school health regulation changes

New York State Education Department (NYSED) proposed amendments to school health regulations that would reduce the burden on school districts to provide emergency care, such as epinephrine injections, and conform with recent changes to statutory requirements.

The amendments address many requests from parents, healthcare providers, schools, and the New York State Department of Health to improve health services for students. The public will have 45 days to comment on the proposed changes beginning Jan. 25.

For full information click here to visit the NYSED news release.

144 Links Digest November 2016

Open enrollment for the Affordable Care Act is underway.  For coverage to be effective as of January 1st, enrollment must be completed by December 15th.  Learn more about applying for coverage through NY State of Health, care mapping, and an opportunity to provide the Centers for Medicare and Medicaid Services feedback on how to expand community-based services in this month's edition of the Links Digest.

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Multiple Systems Navigator Website

The New York State Multiple Systems Navigator Website provides easy access to helpful health, education, human service and disability information in a user-friendly website. The website is designed for youth, parents, family members and caregivers.

Some of the information available include:

  • Navigating Basics - Finding and coordinating services for children with special needs can be like heading out on a journey through a foreign land. These essentials for navigating provides some tips to help you navigate multiple systems.
  • Addressing Challenging Situations - Provides some of the most frequently encountered situations and questions and answers asked by individuals and families requiring assistance from multiple NYS human service systems.
  • Resources - Resources are the core content of the Multiple Systems Navigator website. Resources include websites, publications, videos and hotlines as well as program and service information. All resources are organized by categories.
  • Transition to Adulthood - This section provides information to help individuals plan for the eventual move from children's services to supportive independence or adult services. The Information Pack Series contains comprehensive transition information and tools broken down into different areas of transition.
  • Terms and Acronyms - Provide definition for commonly used terms and acronyms used by service providers.
  • Mapping Tool - Use this mapping tool to find programs, services and family/peer support close to you. Maps also provide driving directions, contact information and hours of operation.
  • Journaling Tools - Journals are important tools that will assist in keeping you organized and provide quick and easy access to appointment information, medication lists and reactions, and important notes and contact information.
  • News, Notes and Events - Stay apprised of current news and events.

Response to Public Comment and Updated Waiver

OPWDD recently completed a public comment period for updates to the 1915 (c) Comprehensive Home and Community-Based Services (HCBS) Waiver, with more than 150 individuals or organizations submitting questions or comments. The completed assessment and response to this public comment and the updated Waiver submission is now available on the OPWDD website. Further issues remain to be addressed and further changes to the Waiver are anticipated.

New York State Population Needs Assessment

In 2015 the Office of People with Developmental Disabilities Balancing Incentive Program provided St. Mary's Healthcare System for Children a grant to assess the need for services for the aging out medically fragile population in New York State, and to develop a pilot group home model for young adults with medical fragility. Young adults with complex care and medical fragility frequently face challenges finding care settings prepared to meet their unique needs. With limited skilled nursing facilities that serve their age demographic and a few group homes capable of meeting their complex clinical needs these young adults are often relegated to social isolation in institutional settings intended for the elderly or left to be cared for by their aging parents struggling with inadequate support.

Using this funding opportunity to carry forth project goals in tandem with policy and capital project components St. Mary's partnered with Family Residences and Essential Enterprises (FREE) and developed a model for a medically supervised IRA to ensure that young adults aging out of pediatric settings - both at St. Mary's skilled nursing facility, and throughout the state - receive long term services and supports in an environment that is age appropriate, enriching, family-centered, and community-based. The pilot residence which is anticipated to open in July 2017 is designed to provided support to eight young adults who are medically fragile and require 24/7 care.

In addition, St. Mary's Healthcare System for Children in partnership with the healthcare research firm of Manatt, Phelps and Phillips completed a formal assessment of the medically fragile population in New York State. Attached below are the results of this analysis in the enclosed report; Children and Young Adults with Medical Fragility; A Population Needs Assessment.

Report: Children and Young Adults with Medical Fragility, A Population Needs Assessment

2016 Code of Conduct Recognition Award Recipients

The Justice Center for the Protection of People with Special Needs announces the winners of the 2016 Code of Conduct Recognition Award. This award honors staff who embody the ethical standards outlined in the Code of Conduct for Custodians of People with Special Needs. Family members, personal representatives and provider agencies submitted the names of 60 candidates to the Justice Center and 17 individuals were selected for recognition.

Of those nominees, the Justice Center's Advisory Council selected four individuals to receive the 2016 Code of Conduct award at an award ceremony which was held on Sept. 29. The winners, listed below, work in programs overseen by the Office for People With Developmental Disabilities (OPWDD) and the Office of Mental Health (OMH):

  • Diane Celano-Carnahan, Supervisor, Operations for Community Living, Inc (OMH) in Smithtown, NY. Celano-Carnahan has a long history of working in the field, with 30 years at Options. She was noted for her exceptional commitment to the people she serves - including organizing and planning a wedding for two residence receiving services at an agency site. She was also cited for diligence in maintaining culturally diverse programs.
  • Rickie and Rose Hoseler, Family Care Providers (OPWDD) in Malone, NY. The Hoselers, who are receiving this award as a couple, were cited for their tireless attention to a child with special needs who they took into their home as family, ensuring to the best of their ability, that he would live his life uninhibited by disabilities and health challenges. They provided loving care to this child throughout his life until his final days.
  • Michael Maloney, Unity House (OMH) in Troy, NY. Maloney is an Assistant Service Director of Community Resources, is the first point of contact for those who come to Unity House for help with food, clothing, employment and homelessness prevention. He helped create a program using peer-to-peer mentoring to encourage adults to find and receive mental health services available to them.
  • Susan Polmateer, Community Habitation/Respite Worker at Saratoga Bridges (OPWDD) in Ballston Spa, NY. Polmateer was nominated by a parent of a non-verbal child she was assisting. The parent described Ms. Polmateer's tireless and creative approaches to teaching daily life skills to the child and how she not only improved the quality of the child's life but that of the entire family.

The following individuals were also recognized for their good work:

  • Olakunle Dada-Bello, Direct Support Professional, On Your Mark, Staten Island, NY
  • Lisa Falbo, Chief of Residential Services, Rockland Psychiatric Center, Orangeburg, NY
  • Marlene Frazier, Manager, AHRC Nassau, Brookville, NY
  • Lisa Getman, Sr. Vice President Corporate Compliance/HIPAA Officer, United Cerebral Palsy, Utica, NY
  • Ryan Haner, Youth Division Aide 3, Finger Lakes Residential Center, Lansing, NY
  • Mike Hill, Teacher, Long Island Developmental Disabilities Service Office, Hauppauge, NY
  • Cynthia Jones, Residential Shift Supervisor/ DSP-R, The Arc of Ulster-Greene, Kingston, NY
  • Lathia Jones, Program Manager, The Children's Village, Dobbs Ferry, NY
  • Cynthia Longo, Director of Residential Services, CN Guidance and Services, Hicksville, NY
  • Maureen Martinez, Director, Residential Services, Job Path, New York, NY
  • Heather Oatman, Mental Health Therapist, Credo Community Center, Watertown, NY
  • Emily Schmerbeck, Behavioral Intervention Specialist, Catholic >Charities Community Services, Rochester, NY
  • Jacqueline Smith, Day Hab Coordinator, Seneca Cayuga ARC, Waterloo and Auburn, NY

Members of the Justice Center's Advisory Council reviewed the nominations and selected award winners who demonstrated an unwavering commitment to the Code of Conduct Recognition Award received a certificate and were honored at an Advisory Council luncheon.

Photo courtesy of The Justice Center. Featured in the photo:
Front row l-r : Susan Polmateer (Saratoga Bridges), Rose Hoseler (Family Care Provider), Diane Celano-Carnahan (Options for Community Living, Inc.),

Back row l-r: Glenn Liebman (Justice Center Advisory Council), William Gettman (Justice Center Advisory Council, Chair) Rickie Hoseler (Family Care Provider), Michael Maloney (Unity House), Jay Kiyonaga (Justice Center, Executive Deputy Director)

NYMAC Conducts PKU Survey

New York – Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) invites anyone with PKU or the parent/guardian of a child with PKU to participate in a survey about formula and medical foods for treat of phenylketonuria (PKU). The results of this 20 minute survey will give information to policy makers about the needs of people with PKU. It will also provide information that will be used to help other parents and people with PKU. Please take the survey online at

Parent to Parent tops’s list of 10 Helpful Special Needs Organizations

"These notable organizations and websites help kids with special needs."   Click here to read their article.

Making the Science of Genetics Personal

Mary Jo Hebert, Regional Coordinator in Parent to Parent of NYS' Capital District office, moves beyond the headlines about human genome mapping to the very personal importance of genetic science for families raising children with disabilities in this beautifully written op-ed piece published by the Albany Times Union April 25, 2015. (Shared here with permission)

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