Don't make the journey alone: How to get the services and supports you need
People 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 themselves or a loved one living with a disability. It can be done!
If you are a parent, 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 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.
The resource guide on the pages that follow is designed to provide a starting point and map 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 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. Of the 10 staff members, eight are parents of children and young adults with disabilities or chronic health conditions, and two have disabilities.
According to co-director Martha-Jean Madison, families find it valuable to brainstorm with the staff about possible solutions to the challenges they are experiencing.
“Sometimes support is just listening. We listen and want to support a parent wherever they are at.”
Besides supporting parents themselves, they also provide training to parents who want to support other parents.
Another important 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, advocacy training and informational materials.
ServiceLink Aging and Disability Resource Centers are located throughout the state and serve people of all ages, income levels and abilities. ServiceLink provides local community-based supported information and supported referral services, options counseling, assistance with understanding and accessing Medicare and Medicaid and a comprehensive online resource directory for individuals seeking information about long-term services and supports.
To better support those in need of services, the NH Department of Health and Human Services recently launched an initiative known as NHCarePath. NHCarePath represents the state’s vision of improved access to services through statewide collaborations and cross training for organizations that provide services, to ensure those seeking help receive consistent information and are provided with resources and information for all their needs. The NHCarePath website, nhcarepath.org, provides helpful information for those seeking resources and support, as well as provides tools and resources for professionals, including training and informational materials.
The Disability 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.
The needs of people of all ages and abilities change over time. What worked for a child in elementary school may not be effective when they are in high school or when they are adults. For parents, it is important to 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. You or your loved one can lead a full and productive life given the right support services and opportunities. You do not have to make this journey alone.