By Marueen Mills, Communications Coordinator, Raising Special Kids
Photo by Jill Nico
The year was 1979 and around one kitchen table in Phoenix sat a group of parents of children with disabilities. They may not have known it at the time, but these parents were about to change the landscape for parents of children with disabilities from birth through age 26 in Arizona. The determined group wanted to make sure new parents had somewhere to go, and most importantly, someone to talk to once they’d received their child’s diagnosis. Each knew first-hand the confusion and frustration of deciphering healthcare information, understanding their role in special education and how to manage the day-to-day experience of being a parent of a child with a disability.
Fast forward more than 35 years and that grass-roots organization has evolved into one of Arizona’s leading disability advocacy organizations — Raising Special Kids. With offices in Phoenix, Flagstaff, Sierra Vista, Tucson, Tuba City and Yuma, the staff of 30 provides support to families throughout the entire state. The experienced and well-trained staff is comprised primarily of parents of children with disabilities, who are uniquely qualified to provide empathetic, high-quality guidance and information in a a practical and useful way.
Raising Special Kids has evolved into one of Arizona’s leading disability advocacy organizations.
The heart of Raising Special Kids’ mission is parent-to-parent support. As a founding member of Parent to Parent USA, and with more than 300 trained parent leaders, new parents can be matched in one-to-one mentorships to gain the experience and knowledge of a veteran parent who’s “been there.”
Another important area of family support services is providing reliable healthcare information. Raising Special Kids helps families navigate systems of care by assisting them in understanding their health insurance benefits, and accessing community resources to meet their child’s unique needs. In cooperation with hospitals and medical centers, Raising Special Kids trains about 50 physicians in family practice and pediatrics each year. Physicians learn about improving communication with parents, especially when delivering a diagnosis, and how to be more sensitive to the needs of families of children with special needs. The two-part training experience includes a home visit as a way to introduce physicians to the realities of each family’s experience in caring for a child with a disability.
Families often need substantial assistance in the area of special education to ensure their child’s educational needs are met. Under Part D of the Individuals with Disabilities Education Act (IDEA), Raising Special Kids is designated as the Arizona Parent Training and Information Center (PTI). Families of children from birth to 22 receive training, information, and individual assistance in understanding their rights and responsibilities in special education.
In addition to fielding thousands of special education calls from parents each year, the staff provides workshops around the state on special education topics such as Individualized Education Program (IEP) training, Positive Behavior Support (PBS) and Turning 18, which covers the legal options and considerations for families when a child with a disability reaches the age of majority.
The highest level of special education support Raising Special Kids provides is one-to-one IEP support where PTI staff attend an IEP meeting with a family; a service that is not available for every situation. Parents who have a disability, grandparents who are raising grandchildren with special needs, or recurring special education issues in a single school district are often reasons for an IEP Partner to assist the family and the school with appropriate and effective advocacy to improve educational results for children with disabilities.
In almost every state, parents can find support and assistance in various programs and services for children with disabilities. In Arizona, many parents find comprehensive assistance and advocacy information available at no cost, and under one roof, at Raising Special Kids.
Raising Special Kids Contact Information:
5025 E. Washington St., Suite 204, Phoenix, AZ 85034
602-242-4366 or 800-237-3007;