Support Groups
Family Support Group
PEND is a support group for parents who have experienced stillbirth or a neonatal death.
The meetings are led by a parent who has experienced the loss of a baby.
Website
Parent-to-Parent Ohio
Website
Parent-to-Parent USA is an alliance of statewide Parent to Parent programs following established best practice standards. Parent to Parent programs provide emotional and informational support to families of children who have special needs most notably by matching parents seeking support with an experienced, trained 'Supporting Parent'. Contact Barbara Weinberg in our local chapter.
The Family Information Network
Ohio Department of Health/BEIS
246 N. High St, PO Box 118
Columbus, OH 43266-0118
Contact: 614-644-8389
Self-Help Group Sourcebook Online
Website
This organization has a wonderful listing of national organizations for various diseases from common to very rare. Most of the support groups for people with special healthcare needs are organized by these national organizations. This guide is a good place to start to find a support group in your area.
Caring Bridge
Website
Create a website to keep friends and family informed about how your child is doing.
NAMI – National Alliance for the Mentally Ill
Website
NAMI offers education, advocacy, and support groups for people with mental illness and their families. Family and teen groups are available.
Contact: 216-875-7776
Achievement Centers for Children
Website
Achievement Centers provides individual, family and group counseling to help address difficult issues, manage stress, and promote emotional well-being. In addition, they facilitate support groups for parents, siblings, grandparents and individuals with special needs to help families learn through interaction with others facing similar challenges.
14587 Madison Avenue
Lakewood, Ohio 44107
Contact: (216) 521-5050 ext.223
Adolescent Health Transition Project
Website
This is a web-based resource created in Washington state. The Adolescent Health Transition Project is designed to help smooth the transition from pediatric to adult health care for adolescents with special health care needs. This site is a resource for information, materials, and links to other people with an interest in health transition issues.
KASA – Kids as Self-Advocates
Website
KASA is a national organization of youth with special needs speaking out in their communities. Their website has helpful advice for teenagers about how to advocate for school accommodations, how to go to a doctor’s appointment on your own, how to make travel easier, and many more issues facing teenagers learning how to be independent.
LEAP (Linking Employment, Abilities, and Potential)
Website
LEAP is part of a national network of Centers for Independent Living. Centers for Independent Living (CIL's) share a basic philosophy. They are based on the belief that people with disabilities, themselves, must be involved in the development of services that are provided to meet their needs. They believe that the needs of people with disabilities can be met most effectively by comprehensive programs that combine self-help and professional expertise in the provision of services, and that people with disabilities can and should be integrated into their communities. In Ohio, centers provide housing assistance, personal assistance services referrals, transportation, benefits counseling, Americans With Disabilities Act (ADA) technical assistance, community education, guidance on assisted devices, employment and transition services for students, and much more.
Cleveland office: 1468 W. 25th St. Cleveland, OH 44113
(Phone,TTY) 216-696-2716; (Fax) 216-696-3317
Lorain office: 2100 North Ridge Road Elyria, OH 44035
(Phone;TTY) 440-324-3444 (Fax) 440-324-2112
Healthcare Transitions
Website
Healthcare Transitions is an initiative in Florida to increase awareness of, gain knowledge about, and promote cooperative efforts to improve the process transitioning from child-centered (pediatric) to adult oriented health care. The site has many printable resources including transition guides for students, parents, and emergency care planning forms.