TABLE 2

Resources for Practitioners Caring for Children and Youth With FASDs in a Medical Home

Resource
FASD general resourcesAAP FASD toolkit: www.aap.org/fasd
PAE screening resources: www.aap.org/pae
Centers for Disease Control and Prevention: www.cdc.gov/fasd
FAS Diagnostic and Prevention Network. FAS facial photography and measurement instruction using images and animations to teach accurate measurement of FAS facial features: http://depts.washington.edu/fasdpn/htmls/photo-face.htm
National Institute on Alcohol Abuse and Alcoholism (NIAAA): www.niaaa.nih.gov
NIAAA Collaborative Initiative on Fetal Alcohol Spectrum Disorders: www.cifasd.org
Handouts easily downloaded for education: https://pubs.niaaa.nih.gov/publications/FASDFactsheet/FASD.pdf
National Institute on Child Health and Human Development: www.nichd.nih.gov
National Organization for Fetal Alcohol Syndrome: www.nofas.org; national and state resource directory: www.nofas.org/resource-directory
Mental health resourcesNational Association on Mental Illness: a grassroots organization with advocacy and educational resources with local and state chapters to support clinicians and families: http://www.nami.org/
American Academy of Child and Adolescent Psychiatry: resources and support for primary care providers, families, and youth: https://www.aacap.org/
SAMHSAFetal Alcohol Spectrum Disorders Center for Excellence: https://www.samhsa.gov/fetal-alcohol-spectrum-disorders-fasd-center
Substance Abuse and Mental Health Services Administration. Addressing Fetal Alcohol Spectrum Disorders. Treatment Improvement Protocol Series 58. HHS Publication No. (SMA) 13-4803. Rockville, MD: Substance Abuse and Mental Health Services Administration; 2014: https://store.samhsa.gov/shin/content//SMA13-4803/SMA13-4803.pdf
SAMHSA treatment locator: www.samhsa.gov/treatment/index.aspx
Education and disability servicesNational Dissemination Center for Children with Disabilities
http://www.parentcenterhub.org/disability-landing/
All about the IEP: http://www.parentcenterhub.org/iep/
Assistive Technology State Programs: connects users to programs that can help them find funding for assistive technology, which is any sort of device or service that allows a person with a disability to perform more difficult or unmanageable tasks: http://www.resnaprojects.org/allcontacts/statewidecontacts.html
Learning Disabilities Association of America: provides parental support services, educates policy makers on legislation regarding learning disabilities, works with school programs that address learning disabilities, and publishes materials for adults with learning disabilities about workplace issues, adult literacy, parenting, and assistive technology: http://ldaamerica.org/
National Center on Accessible Instructional Materials: serves as a resource to educate parents and teachers on accessible educational materials for children who are unable to use regular printed text: http://aem.cast.org/
National Disability Navigator Resource Collaborative: informs people with disabilities about their health insurance options through the Affordable Care Act, helping them enroll in the best possible insurance available to them through the Marketplace: http://www.nationaldisabilitynavigator.org
Employment disability servicesJob Accommodation Network: works with both potential job seekers and employers and helps people with disabilities market their skills and assists employers in understanding the requirements of the Americans with Disabilities Act: https://askjan.org/
SourceAmerica: helps people with significant disabilities find jobs by networking with community nonprofit agencies to fulfill contracting needs for the federal government, offers training to people with disabilities who are trying to find employment, and helps them find the best work environment for their needs: http://www.sourceamerica.org/
Think Beyond the Label: connects qualified candidates with disabilities to businesses looking to hire said candidates through a network of online tools, information, and training to help job seekers find suitable positions and works with businesses to ensure that 7% of their workforce consists of people with disabilities, as mandated by law. http://www.thinkbeyondthelabel.com/
Medical home and care coordination resourcesAAP National Center for Medical Home Implementation: provides tools and resources for care coordination with specific supports, templates, and guides for pediatricians: http://www.medicalhomeinfo.org/
Agency for Healthcare Research and Quality Care Coordination Accountability Measures for Primary Care Practice: a report that presents selected measures from the Care Coordination Measures Atlas that are well suited for primary care practice. The selected measures are divided into 2 sets: Care Coordination Accountability Measures (from the patient and/or family perspective) and Companion Measures (from the health care professional and system perspectives; ie, self-assessment): http://www.ahrq.gov/qual/pcpaccountability/pcpaccountability.pdf
The Pediatric Care Coordination Curriculum: a 4-module core curriculum developed by physicians, nurses, social workers, family partner organizations, and family members demonstrating the principles, key concepts, and activities that are necessary to successfully provide care coordination and multidisciplinary, team-based care: http://www.childrenshospital.org/care-coordination-curriculum
Care Mapping Tool User Guides: family driven tool to support family and/or professional partnerships in working on care mapping. http://www.childrenshospital.org/care-coordination-curriculum/care-mapping
Jeanne W. McAllister and Lucile Packard Foundation for Children’s Health. Achieving a Shared Plan of Care with Children and Youth with Special Health Care Needs, a tool that provides a set of recommendations and templates for shared care planning: https://www.lpfch.org/publication/achieving-shared-plan-care-children-and-youth-special-health-care-needs
ADHD: Clinical Practice Guideline for the Diagnosis, Evaluation, and Treatment of Attention-Deficit/Hyperactivity Disorder in Children and Adolescents. Pediatrics. 2011; http://pediatrics.aappublications.org/content/early/2011/10/14/peds.2011-2654. This updates the AAP recommendations for day-to-day care of patients with ADHD. It is complemented by an interactive overview of the ADHD Care Process algorithm that provides step-by-step guidance for implementing the guideline recommendations. A toolkit is available at: http://shop.aap.org/Caring-for-Children-with-ADHD-A-Resource-Toolkit-for-Clinicians/
Transition to adult-oriented systemsThe National Health Care Transition Center, Got Transition, also developed and published the Six Core Elements of Health Care Transition and created Web-based tools and resources to aid pediatric and adult providers in transition processes: www.GotTransition.org
Patient- and family-centered careFamily Voices: a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs: www.familyvoices.org
Institute for Patient- and Family-Centered Care: fosters the understanding of patient- and family-centered care for professionals, patients, and families seeking to integrate these concepts into all aspects of health care: http://www.ipfcc.org/
Positioning the Family and Patient at the Center: A Guide to Family and Patient Partnership in the Medical Home. A comprehensive monograph with strategies for partnering with families as reported by practices, including offering peer and family support and providing information and education through written materials, programs, and events: https://medicalhomeinfo.aap.org/tools-resources/Documents/Positioning_FINAL_May24.pdf
  • HHS, Health and Human Services; NIAAA, National Institute on Alcohol Abuse and Alcoholism; SAMHSA, Substance Abuse and Mental Health Services Administration.