Welcome to Parent to Parent of New York State

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:

• Support – We offer parents/caregivers the opportunity to connect one-to-one with a parent/caregiver of an individual with the same or similar disability or special health care need – someone who has “been there.”
• Information & Referral – We help families locate the information and services  they need
• Trainings – Workshop sessions are available on Understanding Medicaid Service Coordination, Record Keeping and Using a Health Care Notebook, and various other topics.

The organization’s parent-matching program is based on a model program used across the country. We assist a parent, who has a child with a developmental disability and/or special health care needs, by locating a volunteer support parent who has a similar experience. When a family initially receives a diagnosis, the emotional response can be overwhelming. Talking with another parent is an excellent resource with helping come to terms with emotional acceptance.  Also, employees at Parent to Parent of NYS have a child or relative with a disability or special health care needs.  You are not alone.  (See Emotions and Disability)

When a person is diagnosed with a disability or chronic health care need, the emotions families experience include shock, fear, powerlessness, denial and anxiety. When a person is able to work through the emotional experience, they are better equipped to advocate for their child and their family. Talking to other parents is a tremendous help.

This is the experience of one mom when her son was born with Down Syndrome:   Almost immediately after he was born, hospital staff gave her a black and white pamphlet “This Baby Needs You Even More”. She was left completely alone and unattended for the remainder of that day…. isolated and lacking information.

It is because of experiences like this and our personal experiences that staff at Parent to Parent have chosen this work. We don’t want parents and other family members to feel isolated and alone. We would like to help parents find the resources they need and encourage parents to talk to others who have experience.

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 are a parent who is in need in information and resources, we will help you. Please contact us with your questions. We may not have all the answers but we can help you try to locate answers. Consider using our parent-matching program. If we cannot find a parent within New York, we will try to locate someone in another state. Call one of our offices or submit a request via the website form.

I hope the information on this site is a help to you and give us feedback on other ways we can help.

Contact the office in your area to become part of our parent network or to locate regional assistance.
 
Sincerely yours,
Janice Fitzgerald
Executive Director