Parent To Parent of NYS

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Our Mission

Parent to Parent of New York State builds a supportive network of families to reduce isolation and empower those who care for people with developmental disabilities or special healthcare needs to navigate and influence service systems and make informed decisions. 



Headlines and Highlights

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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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.

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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.

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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.

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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.

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Seeking Families of Children with Medical Complexity for Focus Groups

Location: Women & Children's Hospital of Buffalo

Dates: Tuesday, June 27, 2017 and Thursday, June 29, 2017

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146 Links Digest January 2017

This month's issue contains the Lucille Packard Foundation's powerful photographic essay capturing the experience of families raising children with special health care needs. They are accepting additional entries, so tell your story! Additional information includes tips on how to prepare for well child visits, a chart that explains the difference between a school's identification or classification of a child and a clinical diagnosis, a resource guide for families who are concerned about their child's hearing, and strategies for providing sexuality education to children and youth with disabilities.

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Recommended

ABLE Accounts

ABLE Accounts are tax-advantaged savings accounts for individuals with disabilities and their families,  2016 marks the first year in which ABLE accounts will be available to qualified beneficiaries.    Here are two resources we recommend:   ABLE Accounts: 10 Things You Should Know and Becoming ABLE Ready.


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Parent to Parent of NYS Brochure

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Respectful Language Bookmark

Parent to Parent of New York State designed this bookmark to raise awareness about how the language used to describe people with disabilities shapes the attitudes of those around us.


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Guide to Understanding NYS OPWDD Supports & Services

Developed by Parent to Parent of NYS to inform families about the wide range of services available to qualified individuals and to assist them in accessing those services for their loved one with a developmental disability.


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The Campaign to Immunzye All New Yorkers

The County Health Officials of New York have a comprehensive website, Immunyze, for parents and professionals outlining the importance of vaccinations throughout the lifespan. It includes suggestions for vaccinations schedules as well as scholarly articles to help people make informed vaccination decisions.


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SEFA

State Employees' Federal Appeal

Please consider donating to Parent to Parent of NYS during this year's State Employees' Federal Appeal Campaign.



A Family to Family Health Care Information & Education Center.

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A Message From Our Director




Added / Updated

Seeking Families of Children with Medical Complexity for Focus Groups

Location: Women & Children's Hospital of Buffalo

Dates: Tuesday, June 27, 2017 and Thursday, June 29, 2017


Learn More



Julia Luppino
Dawn Bozuhoski
Shannon McCracken