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

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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New Study for Neurofibromatosis Type 1

Researchers at the Indiana University are currently recruiting both parents and children with Neurofibromatosis Type 1 (NF1). Dr. Swigonski and her team are conducting a study to develop a health related quality of life instrument for NF1 to better understand and measure how NF1 affects people's health and well-being. This study will be conducted by a self-administered survey to be completed by those with NF1 and their parents. The data is anticipated to be collected for this survey by Dec.

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Links Digest #142 September 2016

This month's edition of Links Digest includes information on new HIPAA guidance from the Department of Health and Human Services, an archived webinar on strategies to use when appealing an insurance denial, information on developmental screenings, and a check-list for transition from pediatric to adult service systems.  We welcome your feedback to

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Links Digest #141 Summer 2016

This combined issue of Links Digest offers many useful back-to-school resources, including information on speech and language development, vision and hearing screenings, and dental health.  Did you know that students with learning disabilities are at higher risk of developing clinical depression?  Check out the article and know the signs.  Also included are many helpful links to improve communication with professionals and assist in financing care.

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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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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