When you’re a parent searching for resources for children with special needs, there are a number of things to consider, including but not limited to, what you’re hoping to get out of the organization. Are you looking to help your child make friends and become more social or are you hoping to connect with parents in situations similar to yours? Regardless of what boxes you’re hoping to tick, one thing all special needs organizations should have is strong parent involvement.
“Parent involvement in any organization is critical and that certainly goes for special needs groups,” notes Dr. Brandon Smith, assistant professor of Pediatrics at Johns Hopkins in Baltimore. “Whether it’s a national group, state group or local agency, it’s important parents and caregivers are a part of the team since these are the people who know their kids and the needs of their family best.” Smith also recommends researching and seeking out organizations that serve a diverse group, bringing together families from all backgrounds and regions.
“Another thing to consider is whether or not you’re looking for a group dedicated only to your child’s specific condition or disease, or if you want something more broad and available to all families and children with special healthcare needs,” says Smith.
If you’re looking to get involved with the latter, there are many national special needs organizations that can assist children, their families or both. Here are some of the most notable.
1. Parent to Parent USA
Parent to Parent USA is a group that matches each parent with a fellow parent who has a child with the same special healthcare need, disability or mental health concern, allowing each parent or family to have a contact for sharing information, receiving support and creating new friendships. “Parent to Parent USA has local groups in almost all states, and is great for connecting families with each other for emotional support,” notes Smith.
2. Mommies of Miracles
Deemed the “world’s largest virtual support group for mothers of children who have medical complexities, life-limiting conditions or developmental disabilities,” Mommies of Miracles is an online gathering space for mothers of children with special needs. Their mission is to eliminate feelings of isolation for mothers by connecting them in a safe space from the comfort of their own home.
3. National Youth Leadership Network
Led by young citizens, the National Youth Leadership Network works to build strength and “break isolation” among people with disabilities who are between the ages of 16 and 28. They try to create a culture of full inclusion, sparking new ideas about how to measure success and ability and supporting youth with disabilities in leadership roles. The group hosts workshops around the country for young people to learn how to develop leadership skills.
4. PACER
With the mission that each child, youth, and young adult with all disabilities — along with their families — can reach their highest potential, PACER is a comprehensive “parent training and information center.” Based in Minneapolis, but serving the nation, PACER works to make sure parents can find easily find resources that will help “make decisions about education, vocational training, employment and other services for their children with disabilities.” Other programs of theirs include resources for grandparents, information about bullying and housing, as well as software and adaptive devices and training to help kids with disabilities better communicate.
5. The M.O.R.G.A.N. Project
The M.O.R.G.A.N. Project stands for Making Opportunities Reality Granting Assistance Nationwide. This group, established by parents Robert and Kristen Malfara, supports families in their journey of raising a child with special needs, be that child biological, adopted or within the foster care system. In addition to having a large library of resources and information on their website, the group also assists families with travel expenses for medical treatments and gifts of medical equipment that aren’t covered by insurance, such as wheelchairs. It works to create a group of parents who are supportive of each other in difficult times.
6. Federation for Children With Special Needs
Headquartered in Boston, the Federation for Children with Special Needs is a national organization that provides information, support and assistance to parents of children with disabilities, their professional partners and their communities. By allowing these families to more fully participate in community life, children with special needs are able to grow to their full potential. The Federation promotes the active and informed participation of parents of children with special needs in shaping and influencing public policies that affect their families. The peer support network the group provides allows for families to meet with those who can relate and understand.
7. Family Voices
Another resource Smith recommends is Family Voices, which, according to the Parenting Advocacy Network, “aims to achieve family-centered care” for all children with special needs. Family Voices provides families with the “tools to make informed decisions” about healthcare and education, build partnerships between families and their service providers and serve as a trusted resource on healthcare. They also help families learn to advocate for improved policies to best serve children with special needs. One of their main goals is to empower young people with disabilities so that they may become self-advocates for various causes that affect those with special needs.
8. Council for Exceptional Children
The Council for Exceptional Children is the largest international professional organization dedicated to improving the educational success of children with disabilities. By advocating for successful governmental policies, setting standards for professionals in the education industry, and providing professional development seminars, the organization helps teachers, administrators, parents, related students and other educational support staff to best support and educate the children with special needs with whom they work.
9. Move United
Everyone deserves to have a fun time playing sports, according to Move United. With over 200 member organizations in almost every state, Move United’s single goal is to ensure “everyone, regardless of ability, experiences the life-changing power of sport and is included in their community.” Established in 1956, Move United, which is an Affiliate of the U.S. Olympic & Paralympic Committee, organizes year-round sport and recreation opportunities for people with a wide range of disabilities. Their offerings include more than 70 different adaptive sports.
10. Best Buddies
“Best Buddies is a great organization for helping kids with special needs develop friendships and stay social,” says Dr. Jen Trachtenberg, a board-certified pediatrician in New York City. Best Buddies works to end the “social, physical and economic isolation of the 200 million people with intellectual and developmental disabilities” by helping them form meaningful one-to-one friendships with peers. Through these relationships, Best Buddies works to help those with special needs improve their communication skills, secure jobs and develop the necessary skills to live independently.
11. Friendship Circle
Another resource Trachtenberg recommends is Friendship Circle, which also emphasizes the importance of friendship in the special needs community. Friendship Circle, which has locations throughout the country, pairs teen volunteers with a child with special needs in order to form “lasting friendships” and help teens reap the rewards of “selfless giving.” Most programs take place either after school or on Sundays but include a number of sports, activities, social circles and trips for older kids.
Whether you have a child with special needs, you’re looking to support a family who does or you’re a caregiver for children with special needs, these organizations can aid you in your journey to understanding and advocacy.
