A Letter from the Executive Director
The celebration of a new year always brings with it thoughts of new beginnings. This is especially true for Parent to Parent of NYS as we enter 2014. We thank Janice Fitzgerald, our outgoing Executive Director for her leadership as we look forward to building upon the strong foundation that has been gifted to us.
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. Our message to you remains unchanged: you are not alone. Employees at Parent to Parent of NYS and our volunteer network of Support Parents are here to help. We each have a child or relative with a developmental disability or special health care need and we know the difference being able to talk with another parent can make in dealing with emotions, navigating services, and finding family balance and hope.
If you are a parent who is in need of information and resources, we will help you. Please contact us with your questions by calling one of our offices or submitting a request via the website form. Consider using our parent-matching program, based on a national model of parent to parent support. Parents who are matched with a volunteer support parent and who have the opportunity to be heard as they work through the complicated emotional responses to raising a child with a disability are better equipped to advocate for their child and their family. If we cannot find a support parent within New York, our affiliation with Parent to Parent USA will allow us to try to locate someone in another state.
Our parent-matching program exists because there is a network of volunteer Support Parents who have offered to be listeners and to share their experiences. Consider offering your support and help make a difference for someone else by becoming a Support Parent. It is a great way to volunteer that does not require a large time commitment.
If you would like to build your advocacy skills and/or gain knowledge of service systems, we offer a variety of in-person workshop and web-based training opportunities. Check out our statewide and regional events listings on the website for current information.
There is a strength that comes from parents coming together to listen, support, and learn from each other. There is opportunity in building positive parent-professional partnerships to shape the systems of care that support our families and loved ones. It is these relationships that tell the full story of Parent to Parent of NYS. As we move into 2014, we thank you for being a part of our network, we seek to strengthen our relationship, and we welcome your feedback about how we can serve you better.
This double edition of Links Digest includes information about the recent regulations published to define "home and community-based" in the provision of waiver services, news about the North Country Health Systems Redesign Commission, and resources to learn about the benefits of palliative care. Recent legislation that extends insurance coverage for orally administered formulas for those with eosinophilic esophagitis is also referenced. A Frequently Asked Questions list regarding use of individual NY State of Health marketplace insurance plans is featured.
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 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.