Support from other parents is a key component to getting the services and support you need
When your child is diagnosed with a disability, it helps to know that you are not alone.
Families throughout New Hampshire have successfully navigated the maze of health care, education and human service systems to obtain needed supports and achieve a high quality of life for their child. Thus, one of the best sources of information and support, in addition to your family, friends, health care providers and other professionals, is other parents who share their experiences and wisdom.
We are very fortunate that in New Hampshire there is a strong tradition of parents supporting parents. Many parents mentor and support other parents as volunteers in programs such as Parent to Parent or local support groups. Many of the agencies that support children with disabilities are operated by parents or have parents on staff. These professionals, who have personally experienced the challenges of supporting a child with a disability, bring an exceptional degree of care and commitment to their work.
Parent to Parent of NH provides parent matches between experienced parents, who "have been there" with new or referred parents of children with special needs, as well as support groups and information and referral services. Parents can contact a local coordinator in their community, or the State Director. According to Philip Eller, Director of Parent to Parent:
"A parent to parent match provides an unique but essential ingredient of the support needed for a family when they have a child with a special need. . . Only another parent who has been through the same or similar ordeal and journey can fully appreciate a ‘new’ parent’s feelings, questions and needs. Thus, this supporting or veteran parent can provide unique insights and answer the special questions and concerns of the parent new to this challenging journey. The supporting parent addresses the nitty-gritty issues of raising a child with special needs – those concerns still to deal with when all the professionals and all the family members and friends have gone home at the end of the day."
The resource guide on the pages that follow is designed to provide a starting point and roadmap to help people who are experiencing a disability or caring for a child or adult with a disability find the services and supports they need. Many organizations exist solely to provide information to people and families about how to access needed supports or to assist those who are having difficulty finding services, are having problems with their services, or would like information about their legal rights. These informational resources are listed at the beginning of the guide.
One of the best written resources for someone beginning the journey is a comprehensive guide of services and supports for children and adults, titled "Maneuvering the Maze," produced by NH Family Voices and available online free of charge. Family Voices is a "Family To Family Health and Education Center" assisting families of children, youth and young adults with chronic health, physical, developmental and mental health challenges, through one to one phone assistance, educational materials, online resources, a lending library and quarterly newsletter. All eight staff members are parents of children and young adults with disabilities or chronic health conditions. According to co-director Martha-Jean Madison, families find it particularly valuable to brainstorm with the staff about possible solutions to challenge they are experiencing.
Another important information resource for parents is the Parent Information Center on Special Education (PIC). PIC provides telephone or email support to families with questions about early supports and services, special education, and other disability related concerns, workshops, advocate training and informational materials.
For adults with disabilities, the Service Link Aging and Disability Resource Centers, located throughout the state, provide community-based supported information and referral services and a comprehensive online resource directory. The Disabilities Rights Center provides legal information, advice and in some cases legal representation, to children and adults with disabilities on a wide range of disability-related issues. Many other information resources are listed on the pages that follow.
As your child grows, their needs will change. What worked in elementary school may not be effective when they are in high school or when they are adults. It is important that you maintain a close relationship with your child's primary care physician and school staff, and be involved as much as possible with agencies and service providers. Share with them your child’s gifts, challenges and aspirations. At times it may take patience, perseverance and diplomacy to get the services needed for you and your family.
New Hampshire is a leader in community-based services for people with disabilities. Your child can lead a full and productive life given the right support services and opportunities. You and your child do not have to make this journey alone.