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Lisa Pleasants-Smith From a Family Perspective Children’s Healthcare of Atlanta 17th Annual Cleft Lip and Palate Symposium July 22, 2004 www.friendlyfaces.org Lisa Pleasants-Smith A resource for, and network of, individuals with facial differences, parents, families, friends, and healthcare professionals www.friendlyfaces.org Lisa Pleasants-Smith www.friendlyfaces.org Lisa Pleasants-Smith www.friendlyfaces.org Lisa Pleasants-Smith www.friendlyfaces.org Lisa Pleasants-Smith NICU Coping Strategies 1. Acquiring information 2. Gaining Control (bonding) 3. Social Comparison www.friendlyfaces.org Lisa Pleasants-Smith Early Intervention 1. Craniofacial Team 2. Audiology 3. Babies Can’t Wait, CMS, Georgia PINES www.friendlyfaces.org Lisa Pleasants-Smith Advocacy Begins Proactive Parenting 1. Self-Education/Research 2. Networking www.friendlyfaces.org Lisa Pleasants-Smith Ongoing Challenges Health/Medical Issues 1. Airway Management 2. Nutrition 3. Hearing 4. Craniofacial Surgery 5. Dental 6. Ophthalmology 7. Speech Therapy (Oral Motor and Articulation) 8. Home Health Nursing www.friendlyfaces.org Lisa Pleasants-Smith Ongoing Challenges Education Issues 1. Preparation for Individualized Education Plans 2. Special Education/Hearing Impairment Program Options • Oral/Speech • American Sign Language (ASL) • Total Communication (Oral and ASL) 3. Assistive Technology www.friendlyfaces.org Lisa Pleasants-Smith Ongoing Challenges Social/Psychological Issues www.friendlyfaces.org Lisa Pleasants-Smith Ongoing Challenges Health Insurance 1. Deeming Waiver 2. Health Insurance Premium Plan (HIPP) 3. Babies Can’t Wait 4. CMS 5. Medicaid Waivers www.friendlyfaces.org Lisa Pleasants-Smith Ongoing Challenges Stress 1. Chronic 2. Affects Entire Family 3. Intervention—Counseling, Support Groups www.friendlyfaces.org Lisa Pleasants-Smith Support 1. Continuing Education • Internet • Journal Articles and Books 2. Parent-to-Parent Networking • Parent to Parent of Georgia • Families of Children Under Stress (FOCUS) • Mothers United for Moral Support (MUMS) • Condition-Specific Listservs (e.g. Yahoo! Groups) www.friendlyfaces.org Lisa Pleasants-Smith Essential Resources • Charkins, H. (1996) Children with Facial Difference: A Parent's Guide. Bethesda: Woodbine House. • The Resource Guide for People with Disabilities and their Families in Georgia published by the Governor's Council on Developmental Disabilities. Call 404-657-2126 for a copy. • Families Of Children Under Stress (FOCUS) 3050 Presidential Drive, Suite 114, Atlanta, Georgia 30340 Phone: 770-234-9111 Web site: www.focus-ga.org www.friendlyfaces.org Lisa Pleasants-Smith Thank You! www.friendlyfaces.org