A Letter from the Executive Director
Parent to Parent of NYS is a place where families of individuals with special needs and the professionals who serve them can meet and share information. This website is maintained as a resource for families.
We've walked the walk and are here to help other families:
This month's Links Digest includes an issue brief on self-directed services within a managed care model and news of an insurer dropping participation in Medicaid managed care plans. It also contains information about implementation of the Affordable Care Act in NYS, notification that youth who have aged out of foster care may be eligible for Medicaid coverage until age 26 regardless of income, and a link to The Advocacy Atlas, a new resource tool for families.
The September Links Digest starts a series on accessing health insurance through the New York State of Health Marketplace. Additionally, it includes an update on the Fully Integrated Duals Advantage demonstration (care coordination for those with both Medicare and Medicaid), information on the federal regulations pertaining to transportation by school districts, and a report on low flu vaccination rates for children with either intellectual disability or epilepsy, two high risk categories for flu complications.
The importance of assessing and providing for the needs of family caregivers is highlighted in this month's Links Digest, along with news regarding a crisis in Early Intervention, insurance coverage for ABA (applied behavior analysis), and the latest on implementation of the Affordable Care Act in NYS.
The fact sheets included in this booklet were compiled by Parent to Parent of NYS to assist people in NYS locate information needed when navigating service systems. They are a resource for people learning about access to health care and services. Topical sheets are: Medicaid, Home and Community Based Waivers in NYS, Financial Aid for SpecialHealth Care Needs, Doctor Selection and Section 504.
This booklet of tips sheets is available here in PDF or by contacting your Regional Office.
Compiled by reaching out to families and learning from them, this is a booklet of tip sheets for parents and other caregivers on topics that all families think about: Stress Reduction Tips , Coping with Your Child’s Health Care Needs, Medical Prescription Tips ,Tips on Handling Medical Appointments, Record Keeping, Researching Health Care Information on the Internet, Disability and Emotions and When Your Child is Diagnosed with a Disability - What Next?
A Health Care Notebook is an organizational tool for families who have children with special health care needs.
Using a Health Care Notebook can help you keep track of important information about your child’s health, providers and health history. In caring for your child with special health care needs you will receive information from many sources. This Health Care Notebook will help you organize information in one central place. It will help you track changes in medication/treatments and have a place where you can look up previously used health care professionals (i.e. speech therapist from Pre-K, first ENT, etc.). It will be a place to keep phone numbers, doctors, locations of testing, vendors of durable medical equipment, serial numbers, etc., authorizations/approvals in one place rather than in envelopes and boxes under beds.
Download a complete Health Care Notebook below or contact your Regional Office to request a hard copy.
Self Determination/CSS in New York has created a means of developing the potential for individualized, self-directed services. It offers the opportunity to design services based on an individual’s desires and needs as identified in a Person Centered Plan. It is a mechanism developed by NYS OPWDD (Office for People with Developmental Disabilities).
To read more, download the PDF.
Parent to Parent of NYS designed this poster to promote prevention of Fetal Alcohol Spectrum Disorders and Shaken Baby Syndrome.
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.
Guide to Understanding Supports and Services Administered through NYS Office of Mental Retardation and Developmental Disabilities
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.
Please consider donating to Parent to Parent of NYS during this year's State Employees' Federal Appeal Campaign.