“I am feeling overwhelmed with all the new information, the decisions I have to make, and the actions I have to take. Is there anyone who can help advise and guide me through this process?”
Getting One-on-One Guidance from a Peer
It’s normal to feel overwhelmed when faced with a difficult situation, new information and decisions to make regarding your child’s needs for services. Fortunately there are several organizations whose staff and network of volunteers have had children themselves or have cared for children whose needs have necessitated receiving help from more than one agency. They are called family support advisors, family peer advocates or parent advisors and have “walked in your shoes.”
- They are parents or caregivers who have experience with a child with the same type of disability, chronic illness or heath or mental health concerns and can listen, hear you out, offer emotional support, and stay involved with you over time.
- They can provide answers to general questions or information on a specific disability or health or mental heath care need.
- They can direct you to services in your local area and assist in finding out what services you are eligible for.
- They can assist with practical concerns such as locating and paying for health care equipment or arranging for affordable and reliable transportation in your area.
- They offer workshops and training on a variety of topics important to interacting with service providers to have your child’s needs understood and met. These include how to create a Health Care notebook or an Education Records organizer and how to understand Medicaid Service Coordination.
In addition, self-help and peer support is available for young people who are aging out of foster care and/or have received disability, health or mental health services. See YOUTH POWER! and Youth in Progress for more information.
- Parent to Parent of NYS is an excellent place to start. Parent to Parent builds a supportive network of families to reduce isolation and empower those who care for people with developmental disabilities or special health care needs to navigate and influence service systems and make informed decisions. Use our mapping tool to find a regional office near you. To contact Parent Parent of NYS, call 1 (888) 326-8644.
- Families Together in New York State (FTNYS) is a non-profit family-run organization that strives to establish a united voice for families of children and youth with social, emotional and behavioral challenges. The primary role of each Regional Parent Advisor is to build a relationship with all of the family support services within their region. Parent Advisors provide a forum for local family support services to network with one another. They serve as liaisons, facilitating communication between the New York State Office of Mental Health and the families in the community. Use our mapping tool to find your Regional Parent Advisor. To contact Families Together in NYS, call (518) 381-4350.
- YOUTH POWER! is the New York State network of young people “who have been labeled and are seeking change.” Through peer-to-peer mentoring, YOUTH POWER! staff and volunteers empower young people to be active citizens, aware of government operations, know their rights and use their voices to influence policies, practices, regulation and law. They are young people helping other people, ensuring availability of self-help and peer support while changing systems so that young people get the support they need with the respect and dignity they deserve. Use our mapping tool to find your regional team leader. To contact YOUTH POWER!, e-mail email@example.com or call (518) 432-0333 or (888) 326-8644 (ext 5).
- Autism Society of the Greater Capital Region brings together members of the autism community who are involved in the education, care, treatment and support of individuals with autism. Statewide, they are the driving force behind the development of a network of resources that promotes the quality of life and opportunities for positive social experiences. To contact the Autism Society, e-mail firstname.lastname@example.org or call (518) 355-2191.
- Youth in Progress has six regional teams in New York State. These teams are comprised of youth in care in New York State and promote positive youth development and support adult/youth partnerships in adolescents to achieve successful outcomes. Use our mapping tool to find your regional team.
Of course, you can always call 2-1-1 or 3-1-1 in New York City to be connected to a peer or family support organization.
- Sibling Resources - Become part of a growing network of adult siblings of people with disabilities and take advantage of up-to-date information resources and training opportunities about issues impacting siblings every day. Find a sib-shop near you.
- NY Connects is your trusted place to go for free, unbiased information and assistance. NY Connects can help you link to long term services and supports, such as home care, transportation and meals. Their goal is to help individuals remain in their homes as long as possible.