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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

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.

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The Centers for Medicare and Medicaid Services seek input on community-based services.

Medicaid officials are looking for ways to increase access to home and community-based services for people with disabilities and they are asking for the public to weigh in. Specifically issues affecting beneficiary choice and control, program integrity, rate-setting, quality infrastructure, and the homecare workforce.

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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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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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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